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					summer 2004 chronicle.qxp    11/19/2004   10:49 AM   Page 1




     T H E     C F I D S        A S S O C I A T I O N           O F   A M E R I C A




     CHRONICLE
                    T H E                              C F I D S
                                                                                             Advocacy,
                                                                                             information, research
                                                                                             and encouragement
                                                                                             for the CFIDS
                                                                                             community

       A   QUARTERLY        PUBLICATION     OF   THE    CFIDS   ASSOCIATION   OF   AMERICA    ■   SUMMER      2004




                                                                                             Wish you
                                                                                             could
                                                                                             stretch and
                                                                                             walk, even
                                                                                             exercise,
                                                                                             without
                                                                                             paying for
                                                                                             it the next
                                                                                             day?
                                                                                             CFIDS is an exercise
                                                                                             enigma. The exercise
                                                                                             that is so beneficial in
                                                                                             managing most
                                                                                             chronic illnesses can
                                                                                             actually make CFIDS
                                                                                             symptoms worse.
                                                                                             Find out how new
                                                                                             research and
                                                                                             approaches are
                                                                                             helping many CFIDS
                                                                                             patients solve this
                                                                                             exercise dilemma.
                                                                                             page 6
summer 2004 chronicle.qxp    11/19/2004    10:49 AM    Page 2




       Inside This Issue
       Features
                                                                                                              page 6
       6    When Working Out Doesn’t Work Out
            Postexertional malaise, joint pain, crushing fatigue. There are lots of reasons
            why exercise is often a dirty word to people with CFIDS. Research suggests
            CFIDS patients may not get the oxygen they need during exercise. While a
            cookie-cutter approach to exercise doesn’t work, many PWCs can benefit from
            an analeptic exercise program. BY DR. CHRISTOPHER SNELL, DR. J. MARK VANNESS
            AND STACI STEVENS

       10   Joint Hypermobility & the Link with CFIDS
            Did you know that many PWCs have hypermobile joints? In this fascinating
            article, the author explores this link and explains how the effects of hyper-
            mobility syndrome account for most of the symptoms he sees in his own
            CFIDS patients. BY DR. ALAN POCINKI
       14   Advocacy Made Easy
            In April the CFIDS Association launched the Grassroots Action Center, a
            new online advocacy tool that is not only fun to use, it’s incredibly easy.
            The potential of this powerful tool is truly remarkable. BY MEGHAN BRAWLEY

       16   Perception vs. Reality
            The Association recently commissioned market research and focus group
            studies to find out directly from the public and from primary care physicians
            what they really think about CFIDS. In some ways the research reinforces our       page 10
            worst fears, but in more meaningful ways it points us to the future by identify-
            ing messages that can change hearts and minds. BY MARCIA HARMON
       20   Spotlight on Board Leadership
            Some members of the CFIDS Association of America Board of Directors share
            their thoughts on hot-button issues and future challenges.
                                                                                                           page 24
       22   Leadership in Action
            The New Jersey Chronic Fatigue Syndrome Association is a model of
            leadership. Here, we explore the innovative and extensive activities of
            their Youth Education Committee, led by powerhouse Betty McConnell.



       Departments
       1    Message to Members
       3    Readers’ Forum
                                                                                                 page 25
       4    Research News
       24   Living with CFIDS
            “That was your old life,” BY MARIE TYBUREC
            Reprieve, BY MARY ANNE MITCHELL
       27   DC Dispatch
       30   Media Watch
       32   Association News
summer 2004 chronicle.qxp   11/19/2004   10:49 AM   Page 1




                                                                                            THE CFIDS CHRONICLE



     Message to Members
                                                                                              The CFIDS Chronicle is pub-
                                                                                            lished four times a year by the
                                                                                            CFIDS Association of America,
                                                                                               Inc. It is distributed free of
                                                                                                  charge to members.




     I
         n recent months, as we have met with and heard from members of the CFIDS                 E-mail the editor:
         community, the CFIDS Association Board of Directors has been asked to clarify           mharmon@cfids.org

         the Association’s position on the name change issue. Some people have asked if         E-mail the Association:
     we have given up the fight.                                                                   cfids@cfids.org

          We believe the name chronic fatigue syndrome is inadequate, misleading and                  Website:
                                                                                                    www.cfids.org
     problematic. The term contributes to the lack of understanding of the serious and
     complex nature of the disease. Our position on these two points remains unchanged             Information line:
                                                                                                     800-44-CFIDS
     from 1994, when we first joined others working to change the name.                             (800-442-3437)
          Over the decade since then, the CFIDS Association has invested time, money
                                                                                                    Resource line:
     and energy to garner support for a name change. We funded Dr. Leonard Jason’s                  704-365-2343
     research on the name and its attributions; we sponsored several different name
                                                                                                        Fax:
     change groups, including providing financial support for activities of the federal             704-365-9755
     name change working group that reported its recommendations last fall; and we
                                                                                                The CFIDS Association
     conducted multiple surveys of patients, providers and others on this hot-button                 of America
     issue. We have reported on it regularly in the CFIDS Chronicle and our other publi-           PO Box 220398
                                                                                                6827-A Fairview Road
     cations. Considerable board and staff resources have fueled these important efforts.        Charlotte, NC 28210
          On December 8, 2003, the government’s CFS Advisory Committee (CFSAC)
     declined to recommend a name change, saying, “We feel that a change of the name
     to another name should occur only when there is a better understanding of the          BOARD OF DIRECTORS
                                                                                                  Jonathan Sterling
     pathophysiology of the illness.”
                                                                                                    Oradell, N.J.
          Our board immediately convened by phone to discuss the CFSAC’s position                    Chairman
     and determine how to proceed. What compelled us most was the realization that not               Joseph Lane
     one of the appointed members of the CFSAC—each one knowledgeable about                          Buffalo, N.Y.
                                                                                                    Vice Chairman
     CFIDS, its complexity and its devastating impact—was persuaded to recommend a
                                                                                                   Jane Perlmutter
     name change, even with their combined understanding of the history of the issue               New York, N.Y.
     and the passion it has generated in the patient community. In the face of this, how              Treasurer

     could we expect to persuade the larger medical community and the general public to             Patti Schmidt
                                                                                                   Philadelphia, Pa.
     use a new name not endorsed by experts in the field? The CFSAC’s decision means                   Secretary
     that efforts to pursue a name change stand little chance right now of succeeding
     beyond the patient community.                                                                R. Richard Baldwin
          We have viewed the name change as one strategy to accomplish important                     Newark, Del.

     goals—greater public awareness, expanded research, informed and compassionate              Susan L. Jacobs, J.D.
                                                                                                  Providence, R.I.
     medical care and more responsive government and social services. We’re working
                                                                                            K. Kimberly (Kenney) McCleary
     harder than ever to achieve these ends by other means, until the name change issue            Charlotte, N.C.
     can be vigorously reengaged at a time when success is more likely. Some of these           Mark Peterson, D.D.S.
     activities are described elsewhere in this issue; others are in the planning stages.         Chesapeake, Va.

          We’re also pushing harder than ever to get results from NIH and CDC—results          Lynn Royster, Ph.D., J.D.
                                                                                                     Chicago, Ill.
     that translate into better understanding of the pathophysiology of CFIDS so a name
                                                                                                  Adrianne B. Ryan
     change, firmly rooted in science, is widely supported.                                        Oldwick, N.J.
          Let there be no mistake: we have not abandoned the fight. We will continue to             John Trussler
     report progress on other fronts, and we will be ready to act on opportunities to             Grants Pass, Ore.

     change the name.

                The CFIDS Association of America Board of Directors


     THE CFIDS CHRONICLE SUMMER 2004                                                                                      1
summer 2004 chronicle.qxp             11/19/2004    10:49 AM     Page 2




   STAFF

   K. Kimberly (Kenney) McCleary,
   President & CEO
   kmccleary@cfids.org                             THE CFIDS

                                                   CHRONICLE
   Jamie Davis,
   Director of Development & COO
   development@cfids.org

   Kristina Hopkins,
   Controller
   kphopkins@cfids.org                                S U M M E R             2 0 0 4       ■     V O L U M E             1 7       I S S U E          3

   Marcia Harmon,                                  The CFIDS Association of America, Inc.                   PO Box 220398, Charlotte NC 28222-0398
   Director of Communications
   mharmon@cfids.org
                                                   REPRINTS: Written permission must be obtained prior to reprinting material from the CFIDS
   Terri Lupton,                                   Chronicle and the CFS Research Review. Permission generally will be granted to copy or quote arti-
   Coordinator for Educational                     cles for noncommercial purposes, provided the intended meaning is preserved. For guidelines and
   Opportunities                                   reprint permission, please contact Kasia Faryna at 704-364-0016, or by e-mail at kfaryna@cfids.org.
   talupton@cfids.org
                                                   SUBMISSIONS: The CFIDS Chronicle is interested in articles, stories, book reviews and other
   Kim Almond,
   Development Project Coordinator
                                                   materials on topics of interest to people with chronic fatigue and immune dysfunction syndrome
   kalmond@cfids.org                               (CFIDS), their friends, families and supporters, clinicians and researchers. Submissions are reviewed
                                                   by the editorial staff and may be edited for content, clarity and space. Publication guidelines can be
   Nova Bouknight,                                 obtained from the editor. Send submissions to the attention of the editor to the address above. You can
   CFIDS Support Network
                                                   also send articles direct to mharmon@cfids.org. It is the policy of the CFIDS Association of America
   nbouknight@cfids.org
                                                   not to pay for articles published in the Chronicle.
   Gloria Smith,
   Front Office Manager                            ABOUT OUR ORGANIZATION: The CFIDS Association of America, Inc., is a public, nonprofit,
   gsmith@cfids.org                                charitable organization. In addition to publishing the CFIDS Chronicle and the CFS Research Review,
                                                   the Association directly funds CFIDS research and advocacy efforts and provides free information
   Lois Infanti,
   Accounting and Personnel
                                                   about CFIDS to all who inquire. Individual contributions are the Association’s greatest source of sup-
   Assistant                                       port, and contributions are tax deductible to the fullest extent allowed by law. The CFIDS Association
   linfanti@cfids.org                              of America serves as a clearinghouse for information about chronic fatigue and immune dysfunction
                                                   syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME)
   Kasia Faryna,
                                                   and other names. The Association does not endorse products or services, and the ideas expressed in the
   Marketing Associate
                                                   Chronicle are strictly those of the authors or quoted individuals. The CFIDS Association of America
   kfaryna@cfids.org
                                                   and the Chronicle assume no liability for any medical treatment or other activity undertaken by
   Julie Carothers,                                readers. For medical advice, consult your personal health care provider.
   IT Specialist
   jcarothers@cfids.org                            REGISTRATION AND FINANCIAL INFORMATION: The latest registration and financial
                                                   information filed by the CFIDS Association of America may be obtained by contacting the CFIDS
                                                   Association of America, Office of the Controller, PO Box 220398, Charlotte, NC 28222-0398; fax
   OTHER E-MAIL ADDRESSES                          704-365-9755.
   FOR THE ASSOCIATION

   Visit our website to request
   information by e-mail
   www.cfids.org                                                        OUR M I S S I O N
   To join the Association, subscribe
                                                   The mission of the CFIDS Association of America is to conquer CFIDS.
   to the Chronicle or change your
                                                   The Association works toward its mission by:
   address
   membership@cfids.org
                                                   ■ Building recognition of CFIDS as a serious widespread medical disorder
   To submit articles or letters to
                                                   ■ Securing a meaningful response to CFIDS from the federal government
   the Chronicle
   chronicle@cfids.org                             ■ Stimulating high-quality CFIDS research
   For general inquiries                           ■ Improving health care providers’ abilities to detect, diagnose and manage
   cfids@cfids.org                                   CFIDS

   Jon Sterling, Chairman                          ■ Providing information to persons with CFIDS and enabling the CFIDS
   chairman@cfids.org                                community to speak with a collective voice

   Board of Directors
   board@cfids.org                                                                                       THE CFIDS CHRONICLE SUMMER 2004
summer 2004 chronicle.qxp     11/19/2004       10:49 AM   Page 3




                                                                                R E A D E R S ’          F O R U M

                                                                                     Correspondence with the editor

     Expressing gratitude                          as a relapse trigger. I have found        conveyed in a civil tone, and possi-
          I am a PWC. In 1997 I boarded            that inappropriate anger is a very        bly with great success.
     a plane from Reno, Nevada, to                 sharp warning signal to pay atten-             In the recent, often heated
     Washington, D.C., to help lobby for           tion to what is going on. Also, some      debate over the proposed name
     CFIDS. It was there I had the pleas-          medications impact my emotions.           change, I’ve been heartened to hear
     ure of meeting Kim Kenney, Tom                Prednisone is a very potent anger         thoughtful reasoning on both sides.
     Sheridan, Dr. Robert Suhadolnik               trigger for me. I can’t even take a       I’ve been equally saddened when
     and many other incredible people.             taper dose because it leads to rage       the debate degenerates into pointless
     My trip was one of my biggest                 and depression. Another unexpected        attacks on the character of the
     victories since CFIDS hit my life 17          trigger for me was Biaxin, a com-         debaters. Kim Kenney has worked
     years ago.                                    mon antibiotic. Always check out          for years with the CFIDS
          I felt compelled to write and tell       prescriptions for potential side          Association, always striving for
     you what a highly efficient and               effects.                                  greater public awareness of CFIDS
     effective community you are—and                                            Jill Mouat   and writing intelligent commentary.
     we are! I am always so moved by                                                         In my own experience, I met Dr.
     your Chronicle. Your articles are             The economy of debate                     William Reeves several years ago
     always right on the money. I am so                 I was recently sent a CFIDS/FM       when he came to speak at our local
     utterly impressed with your consis-           newsletter written by members of a        CFIDS support group. I left that
     tently accurate information and your          CFIDS support group. I was floored        meeting feeling that the CFIDS
     fine ability to present it.                   by the biased, angry tone of the arti-    community has no better friend than
          I would revel in a cure so I can         cles. Commentaries about the CFS          Dr. Reeves. Frankly, if I cannot
     pursue a vocal career rich with               Advisory Committee conference             have a cure for CFS, then an under-
     stamina and endurance. I know the             held last September cast certain key      standing, empathetic doctor is the
     CFIDS Association is doing every-             activists and doctors in a most           next best thing, and Dr. Reeves is
     thing it possibly can to give me my           unflattering and even offensive light.    just that kind of man.
     life back, setting me free to live            I couldn’t imagine what profit could           As a disabled PWC of 13 years,
     without such horrific restraints. I           possibly be gained by vilifying           I adamantly refuse to be counted
     want you to know that we know you             hardworking members of the CFIDS          among the mudslingers of CFIDS
     are fighting for us! I dream of the           community.                                activism. If a PWC is angry about
     day I am able to fly back to D.C.                  I feel no need to cast blame on      being incurably sick, I share that
     and perform for all of you to say             people working toward awareness,          frustration; but when that anger is
     thank you for all you do. From the            treatment and cures for CFIDS.            channeled into mudslinging and
     bottom of my heart and with                   Even if these same people address         blame, then count me out. I am too
     abundant gratitude,                           the issues in ways I would not, I still   weary and too sick to be involved in
                  Kelly Jeffery Mooneyham          appreciate their effort, and I still      anything but intelligent, constructive
                                                   respect the difficulty of their task.     dialogue.
     Anger article was welcome                     There is room for debate—for can-                                Liz Burlingame
         I want to congratulate you on             did and open discussion devoid of
     your new format for the CFIDS                 insult. The more we talk, the closer      Best issue ever!
     Chronicle and the relevancy of the            we come to an understanding. The               I am a support/contact person in
     subject matter. I have kept up to             more we yell, the further isolated        Oregon. I’m requesting extra copies
     date on CFIDS and FM literature               we become. What’s more, I could           of the spring 2004 CFIDS Chronicle
     for more than 10 years, and I think           not decipher what, if anything, was       because I have many people who
     the article on anger and its relation-        gained by the attitude of those angry     could benefit from reading and
     ship to health is the most cogent I           activists at the meeting. No point        keeping this issue. In my opinion, it
     have read to date.                            was driven home by the anger with         is the best issue you have ever put
         I would like to expand on the             which it was presented. The same          out.
     thought of anger being recognized             idea could have easily been                                     Barbara Eborall



     THE CFIDS CHRONICLE SUMMER 2004                                                                                              3
summer 2004 chronicle.qxp     11/19/2004    10:49 AM   Page 4




                R E S E A R C H              N E W S

                The latest information on research, treatment and diagnosis of CFIDS and related disorders

       CFS costly to U.S. economy                family members.”                           related to the ability to engage in
            CFS costs the U.S. economy                According to the study authors,       work activity?
       $9.1 billion per year in lost work-       “The extent of the burden indicates             The researchers found that
       place and household productivity,         that continued research to deter-          impairments in physical and mental
       according to researchers at the U.S.      mine the cause of and potential            performance are not consistent
       Centers for Disease Control and           therapies for CFS could provide            among people with CFS or unique
       Prevention (CDC). The study found         substantial benefit both for individ-      to CFS, but CFS can be disabling
       that, on average, CFS costs a             ual patients and for the nation.”          according to SSA criteria. Two
       patient $20,000 per year, or approx-           Reynolds KJ, Vernon SD,               assessment instruments—the
       imately half of his or her annual         Bouchery E, Reeves WC. The eco-            Medical Outcomes Study Short
       workplace and household produc-           nomic impact of chronic fatigue            Form Health Survey (MOS SF-36)
       tivity.                                   syndrome. Cost Eff Resour Alloc.           physical and mental functions and
            Approximately 25 percent of          2004;2(1):4. The full text of the          the Profile of Mood States (POMS)
       people with CFS in the study were         article is available at: http://www.       confusion, fatigue and depression
       unemployed due to the illness. Even       resource-allocation.com/                   scales—seemed to provide the best
       those who continued to work saw,          cotent/2/1/4.                              evidence of impairment in people
       on average, a one-third decline in                                                   with CFS. Functional capacity eval-
       income due to reduced hours and           Factors related to employ-                 uations should be useful in defining
       productivity.                             ment unknown                               a person’s ability to work, reported
            The $9.1 billion estimate is              A study commissioned by the           the authors.
       likely low, report the study authors.     Social Security Administration                  No specific treatment or inter-
       First, the study only included peo-       (SSA) found that unemployment is           vention was effective in restoring
                      ple who met the full       high among people with CFS, but            the ability to work, although indi-
                        CFS case criteria on     no patient characteristics seem to         vidual rehabilitation programs,
                        the day they were        predict the ability to return to work.     cognitive behavior therapy and
                        evaluated and                 The study analyzed 53 CFS             exercise therapy were associated
                            excluded anyone      research studies published between         with increased employment at
                              in a temporary     1988 and 2001 to answer the fol-           follow-up.
                              remission.         lowing questions: (1) What is the               The study authors were limited
                              Therefore, the     evidence that some individuals with        in their analysis by the low number
                              researchers        CFS have discrete impairments that         of relevant CFS studies; the wide
                           state, the study is   are associated with disability?            variety of study designs, which
                     “likely to underesti-       (2) What is the evidence that in the       limited comparability across
                     mate the number of          CFS population, current neuro-             studies; and the nonavailability of
                     individuals affected by     psychological tests reliably detect        standardized assessment tools for
                  CFS” and, as a result, also    cognitive or affective impairments         CFS.
       underestimates the total cost to the      associated with decreased ability to            Important needs in CFS disabil-
       U.S. economy. Second, the figure          work? (3) What is the evidence that        ity research, according to the
       reflects lost labor force and house-      in individuals with CFS, treatments        authors, are development of vali-
       hold productivity only, and does not      are effective in restoring the ability     dated and reliable measures of
       include health care costs, payment        to work? (4) What are the patient          impairment specifically for CFS,
       of disability benefits or declines in     characteristics that best define           analysis of other factors or charac-
       quality of life. Finally, because CFS     improvement or positive outcomes           teristics that might relate to disabil-
       is a chronic illness, the economic        in the CFS population such that            ity, and longitudinal studies of
       losses have a “substantial long-term      they experience improvement in             interventions to find those that are
       impact on the standard of living of       functioning? Where it occurs, how          effective in restoring the ability to
       individuals with CFS and their            is this improvement in functioning         work.


      4                                                                                   THE CFIDS CHRONICLE SUMMER 2004
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         Ross SD, Estok RP, Frame D,              exercise therapy, and their    the part of the brain responsible
     Stone LR, Ludensky V, Levine CB.             progress monitored.”           for assessing the accuracy of
     Disability and chronic fatigue syn-               Edmonds M, McGuire        emotional/motivational information
     drome: a focus on function. Arch             H, Price J. Exercise therapy   and regulation of emotional
     Intern Med. 2004;164(10):1098-               for chronic fatigue syn-       responses.
     107.                                         drome. Cochrane Database            The researchers propose that
                                                  Syst Rev. 2004;(3):            impaired motor planning could also
     Exercise studies analyzed                    CD003200.                      be responsible for CFS patients’
          Exercise therapy improves CFS                                          low levels of physical activity,
     patients’ fatigue, sleep, quality of         Cognitive perform-             since this area is also responsible
     life and work capacity, but the treat-       ance slow in CFS               for the brain’s ability to plan move-
     ment may be less acceptable to                    A recent study suggests ment. They also suggest that distur-
     patients than other management               a new explanation for the      bances in the motivational area of
     approaches, such as pacing and rest.         memory and concentration the brain are a central aspect of the
     This was the conclusion of a                 problems common in CFS. CFS pathophysiology.
     Cochrane Collaboration report on             Prior research has pinned the       De Lange FP, Kalkman JS,
     research on exercise therapy for             blame on general problems Bleijenberg G, Hagoort P, Vd Werf
     CFS.                                         with complex information SP, Van Der Meer JW, Toni I.
          The study’s authors were lim-           processing, but the new
     ited in making conclusions by the            research suggests that the cause may
     small number of studies on exercise          be a specific impairment in the
                                                                                                   CFIDS GLOSSARY
     and CFS. Only five studies met               brain’s ability to plan a response to
                                                  stimuli.                                     Cochrane Collaboration: An
     inclusion criteria; three were
                                                                                               international, independent
     conducted in the United Kingdom,                  The researchers used functional         organization that aims to help
     one in Australia and one in New              MRI (fMRI) to examine brain                  people make well-informed
     Zealand. The United Kingdom stud-            activity and cognitive performance           decisions about health care. It
     ies used the Oxford definition of            in 16 nondepressed CFS patients              specializes in “evidence
     CFS, while the others used the               and 16 matched healthy controls.             reports,” which are analyses of
                                                  While both groups had similar rates          medical research on treat-
     Fukuda (CDC) criteria.
                                                                                               ments for a wide variety of
          Low-intensity exercise seemed           of errors on timed visual and motor
                                                                                               conditions. See www.cochrane.
     to be more effective than high-              imagery tasks, the CFS patients              org for more information.
     intensity, which was used in only            were considerably slower to
     one study. Participants in the high-         respond and had more missed                  Functional Capacity Evaluation:
     intensity study were more likely to          responses. The CFS patients used             A systematic process of
     drop out of the study and less likely        visual processes on nonvisual tasks          assessing an individual’s physi-
                                                                                               cal capacities and functional
     to improve. Exercise combined with           to a greater degree than healthy
                                                                                               abilities to establish the physi-
     an antidepressant medication was             controls, suggesting that the brain          cal level of work he or she can
     more effective than exercise alone,          was trying to compensate for prob-           perform. (American Occupa-
     but adding an intensive patient              lems in motor performance.                   tional Therapy Association)
     education program to exercise                Finally, when they made errors, the
     delivered no additional benefit.             CFS group was nonresponsive in               Functional MRI: fMRI is a brain
                                                                                              imaging tool that shows which
          Because there were so few
                                                                                              parts of the brain are activated
     studies available, the researchers                                                       by various stimuli. A traditional
     suggest that a single study could                                                        MRI shows the brain’s struc-
     substantially alter their conclusions.                                                   ture, but not its function.
     However, the researchers said,
     “There is encouraging evidence that
     some patients may benefit from
     exercise therapy . . . Patients with
     CFS who are similar to those in
     these trials should be offered


     THE CFIDS CHRONICLE SUMMER 2004                                                                                               5
summer 2004 chronicle.qxp   11/19/2004   10:50 AM   Page 6




                                                                  The idea that if you’ll just exercise, eat right
                                                                and take better care of yourself, your health
                                                                          will improve is firmly planted in the
                                                                  American psyche. After all, it works for
                                                                chronic illnesses like type 2 diabetes and heart
                                                                       disease. It should work for CFIDS.
                                                                But it doesn’t. CFIDS is an exercise enigma.
                                                                     What should patients and their doctors do
                                                                  in the face of this enigma? Read on.


                                                                 BY DR. CHRISTOPHER R. SNELL, DR. J. MARK VANNESS
                                                                     AND STACI R. STEVENS, GUEST CONTRIBUTORS




          When Working Out
                                            Doesn’t Work Out
                             I
                                  t is somewhat ironic that for an illness    This is often called graded aerobic exercise,
                                  where patients are often diagnosed as       and it has shown some success for treatment
                                  deconditioned and characterized as lazy,    of CFIDS. However, this success may not
                             exercise exacerbates symptoms rather than        accurately portray the exercise experience
                             relieving them. Well-meaning health care         for a vast majority of people with CFIDS
                             professionals often recommend aerobic exer-      (PWCs). Typically, graded exercise studies
                             cise as a cure-all for the symptoms of CFIDS     employ some form of exercise stress test as
                             without fully understanding the potential        a baseline measure for assessing improve-
                             consequences of their prescriptions. As any-     ments in physical functioning. Given the
                             one with CFIDS who has attempted to “get         trauma such tests can engender, it seems
                             fit” using traditional approaches to exercise    reasonable that many potential participants
                             knows, the results can be devastating.           choose not to continue with the study after
                                   Improved fitness is generally achieved     the initial exercise test. One patient, for
                             by progressively taxing the heart, lungs and     instance, told us the exercise stress test “was
                             circulatory system through increases in dura-    as bad as the worst days I ever had in six
                             tion and intensity of activity, for instance,    years of illness.” Therefore, positive results
                             running faster and for longer periods of time.   from graded aerobic exercise studies may



      6                                                                            THE CFIDS CHRONICLE SUMMER 2004
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     only reflect outcomes for a high-
     functioning and relatively small                             DID YOU KNOW?
     percentage of the CFIDS popula-
     tion. Contrary to the popular                If aerobic exercise is causing you to crash
     mantra “no pain, no gain,” the               and burn, it may be because the way your
     reality of exercise for many PWCs            body processes oxygen during aerobic
     is “no gain, much pain!”                     activity is impaired. There is evidence to
                                                  suggest that there may not be an ade-
     The oxygen debt roller
                                                  quate supply of oxygen during exercise
     coaster
                                                  for people with CFIDS, shifting energy
          By attempting to exercise on
                                                  production from aerobic to anaerobic
     their good days, PWCs often
                                                  processes. The resulting oxygen debt
     become trapped in a cycle of over-
     work and collapse. The conse-                could be contributing to the roller-coaster
     quences of symptom exacerbation,             effect CFIDS patients feel following
     postexertional malaise and even              exercise. The good news is there are
     collapse can ultimately lead to              ways to overcome this deficit.
     activity avoidance. In addition to
     the primary effects of their illness,
     patients are now trapped in a
     downward spiral of decondition-            oxygen being delivered to active         payback may be significantly
     ing, with all its attendant problems.      muscles. There is evidence to            higher. “I felt fatigued, like I had
     It is a cruel irony. They cannot           suggest that this process may be         walked a hundred miles the day
     exercise because it makes them ill,        impaired in CFIDS, with a possible       before,” said one PWC following
     and because they are unable to             link to immune dysfunction. In the       exercise. “I felt very tired and
     exercise they become sicker still.         absence of an adequate supply of         slept most of the day” is another
          The situation is further compli-      oxygen, energy production shifts to      usual response.
     cated by the fact that physical            anaerobic (without oxygen)
     inactivity imposed by chronic ill-         processes. These systems are very        Redefining exercise
     ness can exacerbate already limited        effective at producing high levels            It is our experience that if
     physical abilities and lead to             of energy for short periods of time,     physical activity is to become a
     greater risk of heart disease,             but not without a cost. That cost is     positive in the lives of CFIDS
     obesity, diabetes, osteoporosis and        oxygen debt, which is the differ-        patients, they must forget the tra-
     injury. However, all may not be            ence between oxygen required for         ditional approaches to training that
     lost. The solution perhaps lies in         activity and oxygen
     understanding how the body uses            supplied and used.        “. . . physical inactivity imposed by
     energy.                                         To picture what
                                                                          chronic illness can exacerbate already
          It is painfully obvious that          oxygen debt looks
     many PWCs don’t recover well               like, imagine athletes limited physical abilities and lead to
     from continuous aerobic activity:          doubled over, or          greater risk of heart disease, obesity,
     “I always thought that exercise            prostrate on the
     meant aerobic activity—swim-               ground, unable to         diabetes, osteoporosis and injury.”
     ming, running, biking,” said one           speak and gasping
     patient. “Every time I do some-            for air following a 100-meter            so often fail. It’s not how much
     thing aerobic I pay for it.” This          sprint. Oxygen debt equals fatigue       effort you put out, but rather how
     may be because, for PWCs, the              and, before normalcy can return, it      well you recover from the effort
     activity is not aerobic.                   must be repaid. While this oxygen        that is important. Patients need to
          The aerobic energy system             debt roller coaster is not unique to     recognize that it’s okay to exercise
     depends on a constant supply of            CFIDS, interest rates on the             for a very short time and rest. The




     THE CFIDS CHRONICLE SUMMER 2004                                                                                            7
summer 2004 chronicle.qxp    11/19/2004    10:50 AM    Page 8




                                                    Author Staci Stevens works with PWCs to help them redefine their notion
                                                    of exercise and set activity at appropriate levels to avoid relapse. A PWC
                                                    herself, Stevens knows all about postexertional malaise and crushing fatigue
                                                    following exercise and activity.




          activity should be restorative, or analeptic, serving to      range of motion and improve functional strength—the
          relieve, not exacerbate, symptoms. Redefining exercise        strength necessary to successfully and comfortably per-
          in this way acknowledges that a cookie-cutter                 form normal activities of daily living. Two key elements
          approach to exercise therapy for CFIDS will not work          are matching program and function by setting activity
          because one size does not fit all. To be successful, any      levels at appropriate intensities and for reasonable
          exercise program should be tailored to match the              durations.
          individual patient’s functionality and symptom fluctua-            To find an appropriate baseline for activity, we
          tions. As a prelude to engaging in exercise, patients         propose that initial durations should not exceed 30
          should ask themselves: What activities do I already           seconds, about the length of a typical television
          do? How do I feel immediately after and the following         commercial. As for intensity levels, it is essential that
          day? Do I experience post-activity relapse? What are          patients recover in a reasonable time. To this end, rest
          my exercise goals?                                            is a critical component of analeptic exercise therapy.
                                                                        We suggest that rest periods be at least three times, and
          Analeptic exercise                                            up to six times, longer than exercise bouts. It’s also
               It should be noted that we are not recommending          likely that patients will need to reschedule or discon-
          exercise as a cure for CFIDS. Analeptic exercise is           tinue another daily activity to make time and reserve
          intended to restore functionality lost through inactivity,    energy for exercise.
          give patients a sense of control over their illness and,
          hopefully, improve the quality of their lives. Some           When exercise does work out
          patients also report symptom relief, in particular a              A typical analeptic exercise program progresses
          reduction in muscle and joint soreness and improved
          cognitive functioning. One patient told us: “I really see
                                                                        1   through four stages. Patients should begin with
                                                                        stretching and strengthening exercises. These might
          exercise as a plus for reducing muscle and joint pain. I      include focused breathing exercises, step-ups, wall
          feel like I am getting blood circulation. I feel I can        push-ups, modified chair dips and toe raises. Stretching
          think better.”                                                can be done between strengthening exercises. An
               To this end, activities are designed to train the        exercise progression goal would be increasing from
          short-term, or anaerobic, energy system to increase           one set of four repetitions to two sets of eight.



      8                                                                                 THE CFIDS CHRONICLE SUMMER 2004
summer 2004 chronicle.qxp    11/19/2004      10:50 AM   Page 9




         For stage two, as strength
     2   improves, resistance in the
     form of Thera-Bands or light
                                                                                            References
                                                                                            Fulle, S., Mecocci, P., Fano, G.,
                                                                                               Vecchiet, I., Vecchini, A., Racciotti,
     weights can be added to the work-                                                         D., et al. Specific oxidative alter-
     out. Over time patients should, as                                                        ations in vastus lateralis muscle of
                                                                                               patients with the diagnosis of
     one expressed it, “feel stronger,                                                         chronic fatigue syndrome. Free
     more flexible and able to get                                                             Radical Biology in Medicine, 2000:
     around better.”                                                                           29(12), 1252-1259.
                                                                                            Shephard, R.J. Chronic fatigue syn-
          Stage three of the program
     3    comprises dose-controlled
     interval training—exercising large
                                               Authors Snell, Stevens and VanNess
                                                                                               drome, an update. Sports Medicine,
                                                                                               2001: 31(3), 167-194.
                                                                                            Snell, C.R., J.M. VanNess, D.R.
     muscle groups for a specific length                                                       Strayer and S.R. Stevens. Physical
     of time interspersed with periods         Christopher Snell, Ph.D., and J. Mark           performance and prediction of 2-
     of rest. This could involve walking       VanNess, Ph.D., are professors in the           5A Synthetase/RNase L antiviral
                                                                                               pathway activity in patients with
     up and down stairs with a chair sit-      Sport Sciences Department at the                chronic fatigue syndrome.
     uated on the landing to permit rest-      University of the Pacific. They have            International Journal of In Vivo
     ing between intervals. Success of         been involved in CFIDS research for             Research, 2002:16(3), 107-110.
     this stage is dependent on patients       the past six years and have published        VanNess, J.M., Snell, C.R., Strayer,
     learning to monitor heart rate so         widely on CFIDS-related topics. Staci           D.L. and Stevens, S.R.
     they avoid pushing too hard and           Stevens, M.A., is an exercise physiolo-         Subclassifying chronic fatigue syn-
                                               gist and PWC who has designed                   drome through exercise testing.
     triggering relapse. A functional                                                          Medicine and Science in Sports
     goal would be for the patient             rehabilitation programs for CFIDS               and Exercise, 2003:35(6), 908-913.
     to engage in activities of daily          patients for the last 15 years. She is the
     living without precipitating post-        chair of the Workwell Foundation,
     exertional malaise.                       which is dedicated to research and
                                               improving quality of life for PWCs.
          Finally comes the maintenance
     4    stage. To ensure patients tran-
     sition from chronic fatigue to
                                               Staci is presently serving as a member
                                               of the government’s CFS Advisory
                                               Committee.
     chronic exercise, it’s important that
     they perceive improvements in
     functionality. Setting realistic,
     functional goals and keeping an           “The activity should be restorative, or analeptic, serving
     activity diary can provide motiva-        to relieve, not exacerbate, symptoms. Redefining exercise
     tion. Positive feedback and support
     from family, friends and care             in this way acknowledges that a cookie-cutter approach
     providers is essential to success.        to exercise therapy for CFIDS will not work because
          Exercise can work out and the        one size does not fit all. To be successful, any exercise
     enigma can be resolved when
     PWCs are empowered to get off             program should be tailored to match the individual
     the roller coaster and off the            patient’s functionality and symptom fluctuations.”
     couch, take control of their illness
     and experience enhanced quality
     of life. As one PWC recently
     shared, “It gives me a feeling of
     being empowered because it’s
     something that I’m doing. I’m
     not sitting in a chair feeling
     victimized.”


     THE CFIDS CHRONICLE SUMMER 2004                                                                                                    9
summer 2004 chronicle.qxp                                            11/19/2004       10:50 AM   Page 10




                                               Joint Hypermobility
                                                        &
                                                     the Link with CFIDS
                                                                                               Are you one of many CFIDS patients
                                                                                           who have hypermobile joints? If so, you will be
                                                                                                      especially interested in this article, which
                                                                                             explores joint hypermobility as a possible
                                                                                                predisposing factor to developing CFIDS.


                                                                                                           BY DR. ALAN POCINKI, GUEST CONTRIBUTOR




                                                                                           M
                                                                                                       any people have joints that are unusually flexible, or hypermobile.
                                                                                                       Often the degree of hypermobility is mild, and they don’t even
                                                                                                       realize they are more flexible than others. In more extreme cases,
                                                                                           individuals can amuse their friends by putting their feet behind their head or
                                                                                           popping their thumbs out of joint.
                                                                                                I see many patients in my general medical practice with varying degrees
                                                                                           of hypermobility, but in studying CFIDS patients since 1987 I have been
                                                                                           struck by the presence of joint hypermobility in almost every one. To substan-
                                                                                           tiate this clinical impression, I recently gave a survey about hypermobility-
                                                                                           related symptoms to 20 consecutive patients seen in my office who met the
                                                                                           1994 CDC diagnostic criteria for CFIDS, and I examined their joints for
                                                                                           hypermobility.
                                                                                                The prevalence of hypermobility-associated symptoms in these 20
                                                                                           consecutive CFIDS patients and age- and sex-matched controls (seen for
                                                                                           unrelated medical conditions, such as asthma) is shown in the chart on the
    All photos in this article by David Love




                                                                                           next page. The chart also includes each patient’s Beighton score, a measure of
                                                                                           the severity of joint hypermobility. The Beighton scale assigns one point each
                                                                                           (right and left) for the ability to: pull back the fifth finger beyond 90 degrees;
                                                                                           touch the thumb to the underside of the forearm; hyperextend the knees
                                                                                           beyond 190 degrees; hyperextend the elbows beyond 190 degrees; plus a
                                                                                           ninth possible point for the ability to put both palms flat on the floor while
                                                                                           bent at the waist (without bending the knees).
                                                                                                One thing worth noting is that only 8 of the 20 patients had previously
                                               Being able to amuse friends and             been told by a physician that their joints were unusually flexible. I recently
                                               family with tricks like these may be        saw a patient who is one of seven siblings who all developed CFIDS. They
                                               fun when hypermobile individuals            were studied at NIH in the 1980s in an unsuccessful attempt to find a CFIDS
                                               are young, but the condition can            marker. He is now 50 and walks with a cane because of severe osteoarthritis
                                               lead to many unwelcome physical             and multiple spinal operations, yet when I explained the apparent association
                                               symptoms as people age.                     of hypermobility with CFIDS, his eyes bugged out and he exclaimed, “You

                                               10                                                                                  THE CFIDS CHRONICLE SUMMER 2004
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     mean could I like put my foot
     behind my head before I got sick?                             PREVALENCE OF
     Of course I could. We all could!”                      HYPERMOBILITY-RELATED SYMPTOMS

     What is joint hypermobility?                                                                     NUMBER OF      NUMBER OF
                                                                                                         CFIDS        CONTROL
          Hypermobility syndrome is a                                SYMPTOMS                          PATIENTS       PATIENTS
     condition in which the joints are so
     flexible that they cause symptoms               Ever diagnosed with CFS                               20              0
     such as joint or muscle pain.
                                                     Ever diagnosed with fibromyalgia                      15              0
     Because of the looseness of the
     joints, there is increased strain on            Ever dislocated a joint                                7              0
     the surrounding soft tissues to stabi-          Often get lightheaded on standing quickly             17              1
     lize the joints. These soft tissues are         Bruise easily                                         17              6
     themselves often overly lax and,
                                                     Tend to have cold hands and/or feet                   20              4
     between their laxity and the
     increased strain on them, they are              Often feel cold when others don’t                     17              7
     prone to tearing and spasm, leading             Neck often feels stiff                                18              6
     to pain and stiffness around joints.            Joints often feel stiff, click, creak or grind        20              6
     (Many such painful sites correspond             Ever diagnosed with migraine                          13              3
     to the characteristic tender points of
                                                     Ever had varicose veins                                9              4
     fibromyalgia, so it’s not surprising
     that hypermobility has also been                Ever had hemorrhoids                                  12              3
     associated with the development of              Often crave salty foods                               14              2
     fibromyalgia.)                                  Diagnosed with mitral valve prolapse                   7              0
          The term hypermobility syn-
                                                     Average Beighton score (up to 9 points)               6.3            0.5
     drome usually also suggests the
     presence of other symptoms beyond
     just joint and soft-tissue problems.
     Lax joints are often associated with               The prevalence of features of          The link to CFIDS symptoms
     increased tissue elasticity elsewhere,        joint hypermobility syndrome in my               How might joint hypermobility
     most prominently in the blood                 random sample of patients with              and associated autonomic dysfunc-
     vessels. Overly stretchy veins dilate         CFIDS is quite high, suggesting the         tion account for the development of
     like balloons, filling up with too            possibility of a pathophysiologic           the symptoms of CFIDS? As men-
     much blood, a condition known as              relationship between the two condi-         tioned above, pain in muscles and
     venous pooling. Because much of               tions. In fact, Peter Rowe and his          joints, without swelling or redness,
     their blood is “pooling” instead of           colleagues at Johns Hopkins first           may develop from the excessive
     circulating, individuals with this            described the association of CFIDS,         strain that unstable joints put on the
     condition typically have cold hands           orthostatic intolerance and hyper-          muscles around them. Venous pool-
     and feet, low or low-normal blood             mobility in 1999. David Goldstein           ing not only explains the orthostatic
     pressure and lightheadedness on               has documented the extent of auto-          intolerance seen in many CFIDS
     standing quickly.                             nomic dysfunction in CFIDS                  patients, but diminished blood flow
          Overly elastic vessels may also          patients studied at NIH, and others         to the head and neck may contribute
     explain the predisposition hypermo-           have described autonomic dysfunc-           to sore throat by affecting blood
     bile individuals have to varicose             tion in otherwise healthy patients          flow to neck muscles, and it’s prob-
     veins, hemorrhoids and migraine               with hypermobility. The combination         ably a major contributor to cognitive
     headaches. Problems with anxiety              of hypermobility and autonomic              dysfunction—the “brain fog” many
     and disturbed sleep also appear               dysfunction appears not only to pre-        CFIDS patients describe.
     more likely. The decreased rigidity           dispose certain individuals to                   Hypermobility patients are pre-
     of subcutaneous tissues offers                develop CFIDS, but also accounts            disposed to at least three different
     diminished protection to the blood            for most of its characteristic              types of headaches. Not only do
     vessels underneath, so these patients         symptoms.                                   they often suffer from migraines,
     usually report bruising easily.
                                                                                               but they get tension headaches from


     THE CFIDS CHRONICLE SUMMER 2004                                                                                               11
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                                                                                     Dr. Alan Pocinki examines 23-year-old
                                                                                     CFIDS patient Megan Gurney Lavedas,
                                                                                     a former dancer and gymnast who has
                                                                                     had CFIDS since she was 17. She is
                                                                                     unusually flexible, with a Beighton
                                                                                     score of 9 out of a possible 9 points.
                                                                                     When Dr. Pocinki first saw her six
                                                                                     years ago, her blood pressure was
                                                                                     70/40 and she could barely sit up
                                                                                     without passing out. Today, thanks to
                                                                                     intravenous fluids administered several
                                                                                     times a week and medications, Megan
                                                                                     has graduated from college and is
                                                                                     teaching a dance class once a week.




       chronic strain of overtaxed neck         asleep, the stimulating effect of the       ticity of other tissues, including the
       muscles, which are trying to com-        extra adrenaline may keep them              gastrointestinal, genitourinary and
       pensate for the laxity of ligaments      awake. If they are able to fall asleep,     respiratory tracts. Pain from stretch
       supporting the head. They also are       patients may continue to make               receptors that are too easily stimu-
       prone to dehydration- or hangover-       increased catecholamines overnight,         lated may well be the cause of many
       type headaches from lack of blood        giving them a shallow, dream-filled         of the symptoms of irritable bowel
       flow to the brain.                       sleep, so they are easily wakened           syndrome, interstitial cystitis and
            To compensate for their poor        overnight and then feel unrefreshed.        vulvodynia. Increased pulmonary
       vascular tone and increased venous            Often patients will describe           elasticity may cause airway
       pooling, most hypermobility              waking abruptly an hour or two              collapse, triggering the reflex
       patients appear to have increased        after falling asleep, like they’re          dyspnea—deep and/or rapid breath-
       adrenergic (or noradrenergic) tone.      “running a race,” with their heart          ing and the sensation of not being
       In other words, they make more of        pounding and feeling “wide awake,”          able to get a full breath—that many
       the body’s “fight or flight” stimulat-   with great difficulty getting back to       CFIDS patients describe.
       ing hormones, called catechola-          sleep. Such episodes are often                   Thus, hypermobility and the
       mines (or they may overrespond to        misdiagnosed as panic or anxiety            physical features and dysautonomia
       normal amounts). Increased circulat-     attacks, when in fact their etiology        often associated with it not only
       ing catecholamines typically make        is physiologic, not psychological.          account for virtually all of the diag-
       these patients—when healthy—             With the normal decline in blood            nostic features of CFIDS, but also
       high-achieving, always-on-the-go         pressure during sleep, some patients        explain some of the other symptoms
       individuals, just as so many CFIDS       may actually become hypotensive             often associated with the illness
       patients were before getting sick.       enough to trigger a reflex catechola-       (including orthostatic intolerance),
            Sickness, pain or other stress      mine surge, waking them with a jolt.        as well as some of the physiologic
       can further raise catecholamine lev-     A drop in blood sugar can also be           traits of patients before they got
       els. With high levels to start, any      such a trigger. When I described this       sick.
       physical or psychological stress that    phenomenon to one patient treated
       triggers a further increase makes        unsuccessfully for years for panic          Symptom improvement
       levels way too high, leaving             and anxiety, he exclaimed, “That’s               If this model is valid, then cor-
       patients, as one recently said to me,    exactly how I feel!”                        rection of some of the underlying
       “tired but wired.” They may feel jit-         In addition to problems with           pathophysiology should result in
       tery and appear anxious.                 joints and circulation, hypermobile         improvement of symptoms.
            Similarly, when they try to fall    patients tend to have increased elas-       Although it’s impossible to correct

      12                                                                                  THE CFIDS CHRONICLE SUMMER 2004
summer 2004 chronicle.qxp   11/19/2004   10:50 AM   Page 13




     entirely the problem of venous pool-   “vulnerable population” at risk for
     ing, David Streeten found a decade     CFIDS. It appears that patients with              TIPS FOR
     ago that MAST trousers (like a giant   joint hypermobility syndrome are              IMPROVING YOUR
     blood pressure cuff) inflated around   just such a vulnerable group. These              SYMPTOMS
     the lower extremities and abdomen      individuals normally compensate for
                                                                                          Wearing support hose and
     to force pooled fluid back into        many of their physiologic problems,
                                                                                          keeping your feet elevated
     circulation dramatically eliminated    for instance with increased adrener-          whenever possible may sound
     pain and cognitive dysfunction.        gic tone to compensate for low                like simple measures, but they
     More simply,                                                      blood pres-        can provide real benefits.
     administration     Hypermobility, and the physical                sure and           Your doctor can administer
     of intravenous features and dysautonomia often                    venous             intravenous fluids. Although
     fluids, to tem-                                                   pooling.           it’s a temporary fix, this does
     porarily           associated with it, account for                When con-          increase circulating volume
                                                                                          and relieve symptoms in some
     increase circu- virtually all of the diagnostic                   fronted with       patients.
     lating volume, features of CFIDS and also explain certain trig-
                                                                                          Many patients with hyper-
     also greatly                                                      gers, how-         mobile joints get relief simply
     relieves symp- some of the other symptoms often ever, such as                        by increasing their daily intake
     toms in many associated with the illness.                         acute physi-       of fluids and salt.
     patients.                                                         cal illness,       Cut back on foods that are
     Typical patient responses I hear are,  major emotional stress or even spe-           dehydrating, such as alcohol
     “I feel so much better after the       cific environmental exposures, this           and caffeine, or avoid them.
     fluid” and “The difference between     compensation may be lost, and the             Consider pharmacologic
     before and after the fluid is like     symptoms of CFIDS may develop.                interventions like fludrocorti-
     night and day.” I have been struck,         This model is an observational           sone, which increases salt
                                                                                          and fluid retention.
     as have many of my patients, by        and therefore simplistic one. What
     their observation that receiving flu-  exactly causes the disruption of the          To alleviate venous pooling,
     ids not only improves their fatigue,   previous balance to precipitate the           try prescription high-pressure
                                                                                          hose. Waist-high ones are the
     lightheadedness and overall sense of   onset of CFIDS is unknown.                    closest thing to MAST trousers,
     well-being, but their brain fog and    Although this model predicts an               which are not widely available.
     muscle and joint pain diminish as      essential role for autonomic and/or           While standing in line at the
     well.                                  hormonal (neuroendocrine) dysfunc-            grocery store, frequently
          These observations suggest that   tion, the precise cause must be               shift weight from leg to leg.
     other measures aimed at improving      elucidated by future research.                Small doses of stimulating
     circulation may also help relieve                                                    medications, such as pseudo-
     some of the symptoms of CFIDS. In                                                    ephedrine and phentermine,
     fact, many patients even find simple   Dr. Pocinki began studying CFIDS at           can raise blood pressure and
                                                                                          heart rate and improve circula-
     measures like wearing support hose     the National Institutes of Health in
                                                                                          tion and energy.
     and keeping their feet elevated        1987, and he continues to see CFIDS
     whenever possible are helpful. An      patients as a significant part of his
     increased intake of salt and fluid,    general internal medicine practice in
                                            Washington, D.C., where he is an          References
     and avoidance of medications and                                                 Rowe PC, Barron DF, Calkins H, et al.
                                            Assistant Clinical Professor of
     foods that are dehydrating, such as                                                Orthostatic intolerance and chronic
                                            Medicine at George Washington
     alcohol and caffeine, help many        University. He received a CFIDS
                                                                                        fatigue syndrome associated with
     patients feel better. Also valuable to                                             Ehlers-Danlos syndrome. The Journal
                                            ACTION Champion award in 2000 and           of Pediatrics 1999; 135(4):494-9.
     some patients is the use of pharma-    last year was honored with the D.C.
     cologic measures, such as fludrocor-                                             Goldstein DS, Robertson D, Esler M, et
                                            Medical Society’s Distinguished
                                                                                        al. Dysautonomias: clinical disorders
     tisone or nondeglycerized licorice,    Service Award.                              of the autonomic nervous system.
     which increase salt and fluid                                                      Annals of Internal Medicine
     retention.                                                                         2002;137(9):753-63.
          The consensus of the 2003 NIH                                               Gazit Y, Nahir AM, Grahame R, et al.
     Workshop, “Neuro-Immune                                                            Dysautonomia in the joint hypermo-
     Mechanisms and Chronic Fatigue                                                     bility syndrome. The American
     Syndrome,” was that there is a                                                     Journal of Medicine 2003; 115:33-40.


     THE CFIDS CHRONICLE SUMMER 2004                                                                                        13
summer 2004 chronicle.qxp    11/19/2004    10:50 AM   Page 14




                                                                Advocacy
                                                                   Made Easy
                                                                THE GRASSROOTS ACTION CENTER MIGHT EVEN

                                                                 BE CALLED “ADVOCACY FOR DUMMIES.”
                                                                     IT WILL DRAMATICALLY INCREASE OUR

                                                                CRUCIAL AWARENESS EFFORTS.

                                                                        BY MEGHAN BRAWLEY, SUMMER INTERN




       T
               he Grassroots Action Center      messages provides compelling              residents, this alert was directed to
               is a new and exciting online     evidence that CFIDS warrants more         editorial pages. Almost 2,800 letters
               tool that makes reaching law-    attention.                                were sent to papers across the coun-
       makers, public health officials and           The Grassroots Action Center         try, resulting in quite a few articles.
       the media with timely information        also allows individuals to create              Following the third alert, advo-
       about CFIDS easier than ever. This       custom e-mails on any topic at any        cates sent more than 3,000 letters to
       time- and energy-saving tool was         time, so you don’t have to wait for       Secretary of Health Tommy
       added to the CFIDS Association of        an Action Alert to write to your          Thompson and key members of his
       America’s advocacy arsenal in April      local media or state representatives.     staff. Thompson heads the
       2004. We encourage all Association            The Grassroots Action Center         Department of Health and Human
       members and readers to subscribe to      debuted April 16, 2004, and the first     Services (DHHS) and provides lead-
       the Grassroots Action Center listserv    five Action Alerts were sent weekly       ership for the National Institutes of
       and help us generate a groundswell       to support CFIDS Awareness Day            Health (NIH), the Centers for
       of support for increased research,       on May 12. The first alert targeted       Disease Control and Prevention
       awareness and understanding of           members of Congress who make              (CDC) and several other health
       CFIDS.                                   funding decisions for medical             agencies. These letters focused
            Through the Grassroots Action       research and social services. In all,     attention on the shrinking support of
       Center, we send Action Alerts to         more than 1,300 letters were sent to      CFIDS research by the NIH, rein-
       listserv subscribers when new            Capitol Hill.                             forced the need for more staff for
       CFIDS information is available and            The second Action Alert              the CDC’s research program and
       at times when influencing legislators    enabled individuals all over the          thanked Thompson for creating the
       can make a critical difference. Sub-     country to contact their local media      CFS Advisory Committee of the
       scribers can immediately respond to      to generate CFIDS coverage in their       DHHS, an important forum for
       these Action Alerts by sending           hometowns. The online directory of        moving research and education
       ready-made messages to their legis-      local and national press people           efforts forward.
       lators or to other influential policy-   allows anyone easy access to media             The fourth Action Alert was
       makers via e-mail. We have already       outlets nationwide. Because the edi-      directed to Dr. Zerhouni, director of
       written letters for you, but there is    torial page of local newspapers is        the NIH and an important decision
       space for you to add paragraphs to       widely read by people in the com-         maker concerning research funds.
       customize each e-mail. Adding            munity, including lawmakers and           Over the four-year period from 1999
       something about your personal            other opinion leaders who want to         to 2003, the NIH has reported sup-
       experience with CFIDS to these           know what’s important to area             port of CFIDS research totaling

      14                                                                                THE CFIDS CHRONICLE SUMMER 2004
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                                                                                                 IT’S SO EASY! JUST
                                                                                               FOLLOW THESE STEPS!
     “I want to commend the CFIDS Association for bringing to PWCs
     and their families the Grassroots Action Center and awareness
     campaign. Those of us who serve as advocates have never had
                                                                                             1   Visit www.cfids.org. Click on the
                                                                                                 Capitol building icon located on the
                                                                                             left navigational bar. You will be
     such a wonderfully useful tool! I just can’t say enough about it. I                     directed to the Grassroots Action
                                                                                             Center homepage featuring Action
     have enjoyed participating in the campaign. You have made it so                         Alerts. Click on any of them. (You can
     very easy! Thank you!”                                                                  always go back and choose another
                                                                                             topic later.)
                                          —Kim Weaver

                                                                                             2   Click “Go” in the “Take action now”
                                                                                                 box. (To send letters to local media
                                                                                             or to your state representatives, you
     $31.6 million out of a total budget of         CFIDS patients himself. The show         need to enter your ZIP code in the box.
     $27 billion. This amount is hardly             aired on May 9.                          The next page will ask you to select up
     adequate for a disease that affects                 During this introductory            to five message recipients from a list
     more than 800,000 Americans, costs             campaign to launch the Grassroots        based on your ZIP code. After choos-
     the U.S. economy more than $9 bil-             Action Center, almost 10,000 mes-        ing your message recipients, click on
     lion a year and remains challenging            sages have been sent to senators,        the “Compose message” box.)
     to diagnose and treat. The 1,013 let-          representatives, other members of        NOTE: Follow these instructions if
     ters sent to Dr. Zerhouni implored             the federal government and the           there is not a “Take action now” box
     the NIH to increase its efforts to             media. Because the program is still      on the page after you have clicked an
     find the cause of CFIDS, as well as            in its infancy, the Association is       Action Alert link. Scroll down the page
                                                                                             to find links that say “Click here” to
     biomarkers and effective treatments.           thrilled with this response. But
                                                                                             send a letter, to contact the media or
          The final Action Alert in                 imagine the impact the CFIDS com-        to use the “Tell a friend” feature.
     support of Awareness Day was sent              munity could have on policymaking        Choose one option. On the next page
     to members of Congress, but took a             and CFIDS awareness if every             you will see a “Take action now” box
     different approach than the first              Association member and every sub-        that does not require a ZIP code. Click
     letter. More than 1,000 letters were           scriber to the CFIDSLink joined the      “Go” to be taken to the message
     generated asking members of                    Grassroots Action Center and sent        composition page.
     Congress to write the heads of com-            messages in response to Action
     mittees that make health funding               Alerts! The real power of the tool       3  Personalize the ready-made
                                                                                                message in the space provided.
     decisions.                                     will be apparent when Action Alerts
          PWCs who want to participate
     in lobbying activities on Capitol
                                                    activate large numbers of people to
                                                    deliver a very specific message
                                                                                             4   Make sure to sign your name in the
                                                                                                 text box provided at the bottom of
                                                                                             the page. This system requires your
     Hill, but who are not physically or            within a short time frame.               name and contact information. This
     financially able to do so, are finding              The Grassroots Action Center        information will not be used for any
     the Grassroots Action Center a                 listserv replaces the CFIDS-Activist     purpose other than to identify you to
                                                                                             the recipient. To avoid retyping in your
     valuable tool that gets results. It pro-       (C-ACT) advocacy listserv.               contact information each time you
     vides a consistent, collective voice           Members of the C-ACT listserv            submit a message, click the
     for PWCs and other concerned                   have been automatically included in      “Remember me” box. If you’d like to
     individuals, while still allowing              the new Grassroots Action Center         receive a copy of the message you
     messages to be personalized to                 listserv and will continue receiving     send, click the “Send me a copy” box.
     describe the effects of CFIDS on the           Action Alerts.
     patient and his or her family.
          It has never been easier to be
                                                         If you would like to join in the
                                                    grassroots effort to promote CFIDS
                                                                                             5  Click on the box that says “Sign me
                                                                                                up for the Grassroots Action Center
                                                                                             Listserv” to receive Action Alerts.
     heard. Carol Sieverling, of the                as a national health priority, you can
     Dallas-Fort Worth support group,
     used the Grassroots Action Center
                                                    subscribe to the Grassroots Action
                                                    Center listserv by visiting http://
                                                                                             6  Click the “Send message” box.


     to contact her local radio stations.
     Her letter prompted a KRLD pro-
                                                    capwiz.com/cfids/mlm/. You can
                                                    also subscribe by following the steps
                                                                                             7   You will be directed to a confirma-
                                                                                                 tion page thanking you for using the
                                                                                             Grassroots Action Center. You may opt
     ducer to call Carol. She helped set            outlined in the box on this page.        to use the “Tell a friend” feature here
     up an interview with Larry Sharp, a                                                     by entering the e-mail addresses of up
     local doctor who has a wife and son                                                     to four friends. Click the “Send now”
     with CFIDS and who treats many                                                          box to ask them to send their own
                                                                                             messages. (The CFIDS Association will
                                                                                             not contact your friends unless they
     THE CFIDS CHRONICLE SUMMER 2004                                                         join the GAC listserv on their own.)
summer 2004 chronicle.qxp   11/19/2004   10:50 AM    Page 16




                      People with CFIDS
                   are just hypochondriacs.                  Changing public perceptions about
                                                          CFIDS—and the patients who suffer from the
                                                                  illness—is a top priority for the CFIDS
             CFIDS is another word                        Association. To help us acheive this goal, we
               for a breakdown.                              commissioned research to “map” current
                                                                     public attitudes and identify key
                                                          messages that can change hearts and minds.
                     It’s hard to believe it’s all
                in your head. Why would someone
                        want to live like that?                  BY MARCIA HARMON, DIRECTOR        OF   COMMUNICATIONS




                            Perception vs. Reality
                            W
                                        hat does the general public really      its kind, is very new when compared to vol-
                                        think about chronic fatigue syn-        untary health organizations like the American
                                        drome? Do men and women view            Cancer Society, founded in 1913, the
                            the illness the same way? Are the myths that        American Heart Association, established in
                            were so prevalent a decade ago still impacting      1924, or even the National Multiple Sclerosis
                            the way CFIDS patients are viewed? Is the           Society, founded in 1946.
                            name a barrier that can’t be overcome? How               Although we have come a long way in
                            can we change the public’s attitudes about this     less than two decades, and we have many
                            devastating disease?                                victories to be proud of, efforts to increase
                                 Every CFIDS patient knows that these           public awareness and shape public policy are
                            questions are more than rhetorical. Perceptions     being hampered. The lack of scientific con-
                            about this illness color their lives on a daily     census on the cause or treatment of CFIDS,
                            basis. Perceptions impact the quality of health     the scarcity of resources for research and edu-
                            care and the level of support patients receive      cation on the scale needed, tensions within
                            from family, friends, co-workers—almost             the patient community, and the lack of a visi-
                            everyone they come into contact with.               ble spokesperson have all worked against
                            Perceptions have power, for good or bad.            acceptance of CFIDS as a serious and legiti-
                                 Since its inception in 1987 the CFIDS          mate public health concern.
                            Association has worked to help shape these               We have a lot of anecdotal evidence,
                            perceptions by educating the general public         much of it from the patient community, about
                            and health care providers about this illness.       attitudes, but the Association decided to take a
                            Given the fact that the illness was only recog-     more formal measure of public and provider
                            nized in the mid-1980s by the Centers for           attitudes about CFIDS. Last fall we commis-
                            Disease Control and Prevention, it is still rela-   sioned the Winston Group, a highly regarded
                            tively “new” to the mainstream American             firm with expertise that matched our needs, to
                            consciousness. The CFIDS Association itself,        conduct research to give us concrete informa-
                            although the largest and oldest organization of     tion to guide future decisions about how to

      16                                                                              THE CFIDS CHRONICLE SUMMER 2004
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     best use limited resources to effect                In the spring issue of the CFS        Assigning motives and blame
     attitudinal shifts that will positively        Research Review we published the              Skepticism about whether CFIDS
     impact the lives of CFIDS patients.            first article in a two-part series on      is physical or mental in origin
                                                    the results of the research with pri-      affected the way the general public
     Research methodology                           mary care physicians. The second           perceives not only the illness itself,
          The Winston Group conducted               article will appear in the fall issue of   but the patients who have it. People
     a mix of qualitative and quantitative          that publication. Here, we will limit      were more likely to assign blame to
     research to discover the beliefs and           our coverage to the perceptions of         patients and to look for underlying
     feelings people hold about CFIDS.              the general public that were               motives for those identifying them-
     Focus groups (qualitative research)            revealed by the research.                  selves as having CFIDS:
     were used to determine how key                                                            ■ It’s an attention-getting disorder.
     audiences feel about the illness. Two          Physical vs. psychological
                                                                                               ■ A CFIDS diagnosis gives people
     focus groups were held in                           The research was geared to
                                                                                                 the right to quit their job and
     Alexandria, Virginia, with primary             assess basic knowledge about
                                                                                                 collect disability.
     care physicians. Two were held in              CFIDS. In the absence of concrete
                                                                                               ■ CFIDS is more of a choice, not
     Fairfax, Virginia, among the general           knowledge about the cause of the
                                                                                                 an accident.
     public, with one group of men and              illness, there was a lot of debate
                                                                                               ■ Problems associated with CFIDS
     one of women. And two focus                    over whether CFIDS is physiologi-
                                                                                                 stem more from being over-
     groups were conducted in Phila-                cal or psychological in origin. The
                                                                                                 weight, unhealthy and having a
     delphia, Pennsylvania, with women              men were evenly split on this point;
                                                                                                 bad marriage.
     between the ages of 30 and 50.                 they were also confused as to
                                                                                               ■ It is caused by stress and our
          Following the focus groups,               whether a mental condition causes
                                                                                                 rush, rush lifestyles.
     omnibus questions were designed to             CFIDS, or if the illness leads to psy-
                                                                                               ■ I think of young women who are
     quantify the research findings. A              chological symptoms. Women were
                                                                                                 depressed and unhappy.
     telephone survey of 1,000 registered           more likely to believe that CFIDS is
                                                                                               ■ Because it gets you out of things,
     voters who are demographically                 a physiological illness that may
                                                                                                 I think of lazy people when I
     representative of the general popula-          result in psychological problems.
                                                                                                 think of CFIDS.
     tion was conducted to ensure that              Here are some views expressed on
     what we learned from the focus                 the topic:
     groups was representative of the               ■ CFIDS is basically depression.
     general public and to quantify the             ■ People with CFIDS are just                      A CFIDS diagnosis gives
     key messages generated by the                    hypochondriacs.                           people the right to quit their job
     focus group results.                           ■ Some people don’t think it exists.               and collect disability.
          Research compiled by the                  ■ CFIDS is another word for a
     Winston Group allowed them to                    breakdown.
     create “perceptual maps” of the                ■ Because nothing can be
     existing belief and value systems                found physically, it
     held by two target audiences: the                must be a mental                 A CFIDS patient seeks sympathy
     general public and primary care                  thing.                             with a “woe is me” attitude.
     physicians. Understanding the per-             ■ I believe it is primarily
     ceptions that form these audiences’              physiological, then leads to
     conclusions about CFIDS is vital to              psychological problems.                   ■ A CFIDS patient seeks sympathy
     identifying the underlying beliefs             ■ I associate CFIDS with depres-                with a “woe is me” attitude.
     and assumptions we need to change                sion and dysfunction.                     ■ CFIDS began because somebody
     to shift our target audiences from             ■ It’s hard to believe it’s all in your         thought they were tired and made
     their original conclusions to percep-            head. Why would someone want                  up a disease for it.
     tions and attitudes that more closely            to live like that?
     match the reality of this disease.             ■ The symptoms can be serious,                    There was strong conflict
     Determining how to create this atti-             but CFS can’t be proved.                  between viewing CFIDS patients as
     tudinal shift is vital to the success of       ■ It starts out physical, but then          lazy malingerers and seeing them as
     any future public or provider educa-             becomes psychological.                    sympathetic victims of a mysterious
     tion and awareness efforts.                    ■ It is not in your head.                   illness. Some participants were


     THE CFIDS CHRONICLE SUMMER 2004                                                                                               17
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        What concerns me is that we                                                                   CFIDS is a serious
        don’t know how to prevent it.                     Since doctors can’t                         and real disease.
                                                  categorize it physically, they want to
                                                     assign it to a mental problem.



                    With CFIDS cases, the
                                                                     system is more adequately geared toward treating acute
                doctors are at a loss, which is
                                                                     illnesses than chronic illnesses. They were divided on
                  frustrating and confusing.
                                                                     the question of whether an acute or a chronic illness
                                                                     would be worse, but both men and women indicated a
                                                                     slight preference for the view that a chronic illness
       unsure whether to be skeptical or sympathetic in the face     would be worse, even though some acute illnesses can
       of varying opinions among focus group participants, and       be fatal.
       some vacillated back and forth. Without knowledge,                 Other key perceptions related to how the health care
       people were easily swayed by misinformation supplied          system responds to CFIDS include:
       by others.                                                    ■ CFIDS is so misunderstood.
                                                                     ■ No one knows what causes it or why you get it.
       Fear and empathy                                              ■ I am concerned about CFIDS because there is so
            In spite of some harsh attitudes, the research find-       much we don’t know about it.
       ings also show the general public is concerned about the      ■ Because there is no treatment, I would feel helpless.
       illness. Discussion about CFIDS among participants and        ■ With CFIDS cases, the doctors are at a loss, which is
       the sharing of both facts and opinions led respondents to       frustrating and confusing.
       sympathize with patients and imagine what it would be         ■ There is only so much the system can do for you.
       like to have CFIDS, whether or not the symptoms are           ■ What concerns me is that we don’t know how to
       physical or mental in origin. Most expressed both fear          prevent it.
       and empathy:                                                  ■ It’s often misdiagnosed.
       ■ I fear what it might do to my life if I really did have     ■ The treatment and cure for CFIDS is vague and
         CFIDS.                                                        uncertain. There is no course of meds to take.
       ■ I wouldn’t be able to have a career.                        ■ Since doctors can’t categorize it physically, they want
       ■ How would I support my family?                                to assign it to a mental problem.
       ■ I would be frustrated if I had it because my husband
         would not support me or buy the diagnosis.                  Affirmation
       ■ It would be debilitating.                                        While the research validated many of the complaints
       ■ Others don’t believe you, and you may lose friends.         from the patient community about public perceptions of
       ■ It would be hard to care for my children.                   CFIDS, there is some encouraging data. The old stereo-
       ■ CFIDS leads to extremely low energy levels. I would         types about CFIDS being the “yuppie flu,” with suffer-
         have no creativity or desires.                              ers labeled as hypochondriacs still exist, but they are
       ■ Would people have sympathy for me, or blame me?             waning. Some participants held to these old myths, but
       ■ There is a stigma attached to CFIDS.                        most did not. Some people’s perceptions had been
       ■ You stigmatize yourself because you think you’re            changed beforehand by knowing someone with the
         going crazy.                                                illness; other attitudes were changed favorably by facts
                                                                     shared at the focus groups. Some pertinent comments
       Health care system lacks answers                              were:
            The research also included an assessment of the gen-     ■ I am somewhat familiar with chronic fatigue
       eral public’s perception of the overall health care system      syndrome, and I believe it would be debilitating.
       with regard to CFIDS. Participants were asked about the       ■ Before my husband’s experience, I thought it was all
       treatment of acute illnesses compared to chronic ones,          bunk.
       how the health care system responds to a CFIDS diagno-        ■ Knowing someone with the disease made me regard
       sis and what patients with CFIDS can expect.                    it as more serious.
            Both men and women agreed that the health care           ■ CFIDS is a serious and real illness.

      18                                                                              THE CFIDS CHRONICLE SUMMER 2004
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     ■ Anyone who has to spend their life in bed has a            not get better. The fact that physical or mental activity
       serious illness.                                           may lead to postexertional malaise and an exacerbation
     ■ I guess it is a real disease.                              of symptoms is a powerful persuader that “it’s not the
     ■ Even exercise doesn’t work, and exercise is usually        patient’s fault.”
       the cure-all.                                                   Another specific message that changed respondents’
                                                                  attitudes was the sense that the clock is ticking on the
     What’s in a name?                                            possibility of a good outcome for CFIDS patients. The
          In the general public research, respondents pointed     fact that CDC studies indicate that the greatest statistical
     to problems with the name chronic fatigue syndrome.          likelihood for recovery occurs in the first five years of
     The general population of women felt the word fatigue        illness—and that delays in diagnosis and symptom man-
     misrepresents the disease; the men honed in on the word      agement are linked with poorer long-term outcomes—
     syndrome, saying it doesn’t sound as serious as the word     clearly alarmed research participants. They were more
     disease.                                                     likely to understand and support the need for early
          However, respondents stated that “a name is what        diagnosis and effective treatments to increase the
     you make of it” and suggested that any new name would        chances of recovery.
     be stigmatized too unless public awareness about CFIDS           Another key motivator for changing attitudes was the
     is raised. Researchers concluded that while the name is      fact that in spite of thousands of research studies on
     problematic, it’s not a signifi-                                                       CFIDS, no one knows what
     cant stumbling block to increas- Once people are given even a few                      causes the disease or how or
     ing public awareness of CFIDS                                                          why people get it. This led par-
                                           basic facts about CFIDS, the number
     and support for patients. While                                                        ticipants to the conclusion that
     the Association still endorses        of Americans who reported they                   the illness is mysterious and
     an ultimate name change, the          believe it’s a serious illness rose 9            misunderstood and that we need
     research supports the conclusion                                                       to unlock those mysteries.
     that we can move ahead with           percent, from 64 to 73 percent.                       It’s clear that present atti-
     new public education and                                                               tudes about CFIDS contribute to
     awareness initiatives even without a name change. The        the low rate of diagnosis, lack of or delayed access to
     name doesn’t define the disease; the lack of information     appropriate health care services, the withholding of sup-
     defines the disease.                                         port and validation from those who traditionally form a
                                                                  patient’s support system, and a sense of hopelessness
     Changing attitudes with specific messages                    among CFIDS patients and their providers. These
          This research shows that the general public is rela-    perceptions can’t be shifted without broadening our
     tively uninformed about CFIDS, confused about whether        existing outreach to the general public.
     or not it’s a legitimate disease and unsure if it’s a             More efforts must be made to educate the public
     psychological or a physiological illness. The level of       about CFIDS to improve recognition of the characteristic
     stigmatization patients endure is high. Because of           symptom pattern, encourage those whose symptoms fit
     societal attitudes, patients are often denied the vital      this pattern to seek care early in the course of the illness,
     support system from their family, friends, employers and     and improve the support system (including appropriate
     physicians that is essential to combat a chronic illness.    medical services) for the patient to maximize function
     That’s the bad news.                                         and quality of life until research yields more effective
          The good news is that the quantitative research con-    treatment and prevention strategies. Improving the social
     ducted by the Winston Group showed that once people          context for CFIDS is likely to have important therapeutic
     are given even a few basic facts about CFIDS, the num-       benefits for patients and families who consistently report
     ber of Americans who reported they believe it’s a serious    that the stigma associated with CFIDS is as damaging as
     disease rose 9 percent, from 64 to 73 percent.               the condition itself.
     Perceptions change favorably with knowledge.                      In the coming months the Association will be
          Some key messages were identified during the            vigorously preparing for major educational initiatives
     research as the most persuasive in changing attitudes.       targeting the general public, and pursuing the financial
     Many focus group participants were stunned that exer-        resources needed for this ambitious goal. Stay tuned to
     cise doesn’t improve CFIDS and could actually make it        both the CFIDS Chronicle and the CFIDSLink for more
     worse. Respondents took CFIDS more seriously when            information. ■
     faced with facts that suggest that even when patients take
     “positive actions” such as exercising or resting, they may

     THE CFIDS CHRONICLE SUMMER 2004                                                                                         19
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                                                   Spotlight
                                                                        on Board Leadership
       The CFIDS Association is fortunate to
       have the services of a dedicated board.
       In the last issue, six board members
       weighed in on a few hot topics. Here,
       the remainder share their perspectives.
                                                                                “The CFIDS community
                                                                                faces many challenges dur-
                        “We know that the energy envelope of a PWC on           ing the coming decade as
                         any given day can vary drastically. But on good        we marshal our human and
                          days, one of the most vital acts you can perform is   financial resources to conquer
                         to gather information to help you in ways that         this disease. If we are to be a force
                        make a real difference in your life. The CFIDS          to be reckoned with, we need to speak with
                       Association wants to be your partner in this             a common voice and a reasoned tone. We
                    endeavor. Toward that end, we provide practical infor-      don’t want to make it too easy for policy-
       mation that can empower you as you seek medical care, employ-            makers, those in the government and private
       ment accommodations, Social Security disability benefits, social         sectors who appropriate funds for research,
       services or support from family and friends. I encourage you to use      or health care professionals to dismiss us as
       all the resources the Associa-tion has to offer. We have brochures,      angry attention-seekers or emotionally
       thousands of pages of information on the website, an e-newsletter,       unstable individuals—something that has
       the CFIDS Chronicle, the CFS Research Review and a phone                 happened far too often in the past. This
       resource line to help you navigate your way through this illness.”       doesn’t mean we cannot disagree, but our
                                  —Susan Jacobs,                                debates on issues such as the name change
                                     Attorney                                   should be respectful and include appreciation
                                                                                for the efforts everyone is making. Sarcasm,
                                                                                innuendo and personal attacks cast a
       “I believe one of the true tests of leadership is the abil-              negative light on us all.”
       ity to do the right thing, even when it’s not the popular                             —Lynn Royster,
       choice. It’s true if you are a high school club officer                                 Professor at DePaul University
       who has to stand up and protest risky, out-of-bounds
       activities of fellow members at a club social event. It’s
       true if you are the CEO of a large corporation who has to
       stand firm and push through a much-needed but much-
       opposed corporate restructuring. And it’s true of CFIDS Association
       board members who must focus on activities that have the best
       chance of accomplishing the Association’s mission, rather than getting
       bogged down in issues that are not propelling our cause forward.”
                                  —Rick Baldwin,
                                     Information technology manager



      20                                                                            THE CFIDS CHRONICLE SUMMER 2004
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                                                                         BOARD DIRECTOR
                      “During my 13 years with the CFIDS
                                                                     ESTABLISHES SCHOLARSHIP
                         Association, I’ve been struck by a
                        consistent refrain I hear from mem-
                                                                       Lynn Holaday Royster knows how CFIDS can
                        bers: “Thank you for being there to
                                                                  impact the educational pursuits of young PWCS. Her
                      carry on the fight when I’m too sick to
                                                                  personal journey with her son, Patrick, who has had
                    do my part.” CFIDS imposes very real
                                                                  CFIDS for the past 18 years, led her to pilot the Chronic
     limits on energy and activity. We understand that these      Illness Initiative at the School for New Learning at
     limitations can mean having to choose between taking         DePaul University, where she works. This program is
     a shower or having dinner with the family as the main        designed to help individuals with chronic illnesses
     activity for the day. So we’re very grateful for those       complete their undergraduate degree.
     who can manage from time to time to write to their                Students with fatiguing illnesses like CFIDS,
     state representative or inform a local health reporter       rheumatoid arthritis, MS, fibromyalgia and lupus often
     about CFIDS. But on the days when that level of per-         find it difficult, if not impossible, to meet the require-
     sonal advocacy simply isn’t possible, the Association        ments of a conventional college program. The Chronic
     will be there, to educate and advocate, to speed             Illness Initiative gives such students the option of com-
     progress in the fight to conquer CFIDS. For me, it’s a       pleting all degree requirements online and offers flexible
     great honor to contribute to that constancy of purpose,
                                                                  time requirements to complete coursework. A special
                                                                  advisor is assigned to each student to help them plan
     always mindful of the women, men and kids who count
                                                                  and execute their studies.
     on us to do what they cannot.”
                                                                       Until this year, the program has only been accepting
           —Kim (Kenney) McCleary,                                students over the age of 24. Now it is also open to
             President & CEO of the CFIDS Association
                                                                  chronically ill students between the ages of 18 and 23
                                                                  through the Inside Track option. This special track pro-
                                                                  vides additional guidance to younger students, many of
                                                                  whom may not have the life experience and self-directed
                                                                  perspective of older students.
     “One of the most valuable lessons
     I’ve learned as a board member of                                 Also new is the Chronic Illness Scholarship Award,
     the CFIDS Association has been the                           an endowed scholarship established this year by Lynn
     importance of advocacy. Whether                              Royster to honor her son. The scholarship is open to
     you lend your time or support to a
                                                                  students who are enrolled, or are in the process of
                                                                  enrolling, in DePaul’s School for New Learning.
     grassroots letter-writing campaign or
                                                                  Applicants must have a disabling chronic illness and
     you visit legislators on Capitol Hill, every effort has
                                                                  demonstrate financial need.
     the potential to change hearts and minds, forever
                                                                       The scholarship is especially meaningful to Lynn.
     altering the way this disease is viewed in the public
                                                                  “When you see what kind of effort ill students—many
     eye, in your doctor’s office and in the halls of             of whom are financially devastated because of their
     Congress. Granted, this is not an easy road, and each        illness—are willing to put out to get an education, it
     leap forward is hard won. But without the advocacy           makes you want to do everything you can to help them.”
     efforts of Association members and leaders, we never              For more information about the scholarship and
     would have won the Social Security ruling that has           specific requirements for applying, go to http//:www.
     made it easier for thousands of PWCs to win disabil-         snlonline.net. Follow the link to “Prospective Students”
     ity benefits. We never would have recovered the              and “How to Apply.” The deadline for applying is
     $12.9 million in misdirected reasearch funds at the          August 1 of each year.
     CDC. And we never would have made educating
     health care providers about CFIDS the government
     priority that it is today. Advocacy translates into very
     tangible benefits for people with this disease.”
        —Adrianne Ryan,
          Former director/producer for ABC News and ESPN




     THE CFIDS CHRONICLE SUMMER 2004                                                                                           21
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       Leadership in Action
             Betty McConnell never imagined herself
         becoming an advocate for anything.
            But when her son became ill with CFIDS,
       everything changed. Today, Betty heads the
               Youth Education Committee of the NJCFSA,
                  where advocacy leads to action.



       S       ince its formation in 1995, the New Jersey
               Chronic Fatigue Syndrome Association (NJCFSA)
               has worked hard to improve the lives of children
       and adults afflicted with CFIDS. Toward that end, the
       Youth Education Committee was established by NJCFSA
                                                                                    Betty McConnell is a positive and
                                                                                    inspiring force for both children and
                                                                                    adults with CFIDS.



       vice president Betty McConnell.                            CFIDS-diagnosed child or adolescent and to provide
           As one of the founding members of NJCFSA, she was      them with educational materials on pediatric CFIDS. Our
       the only board member at the time who not only had         committee is also dedicated to increasing awareness of
       CFIDS herself, but was raising a child with the illness.   CFIDS in children and disseminating reliable informa-
       “I became an advocate for my son Scott in 1987, so it      tion to schools, pediatricians and the general public on
       was only natural that I would become an advocate for all   the seriousness of chronic fatigue and immune
       children with CFIDS in New Jersey,” says Betty.            dysfunction syndrome in young people.
           Betty is most proud of establishing the NJCFSA
       Scholarship. The $1,000 scholarship is awarded to gradu-
       ating high school seniors with CFIDS in New Jersey who
       are continuing their education at a college or technical
                                                                  Q      How does the NJCFSA Youth Education Committee
                                                                         help parents and children with CFIDS?

       school. The scholarship mailing to every high school in
       New Jersey has become an outstanding awareness project
                                                                  A     Our committee has put together a pediatric educa-
                                                                        tion package that contains numerous articles on
                                                                  pediatric CFIDS. The package includes a reading list of
       in itself, but it’s only one part of the NJCFSA’s varied   books, a resource list of websites and newsletters about
       programs for youth.                                        CFIDS, a checklist for school nurses, medical journal
            Betty has been instrumental in targeting organiza-    articles on pediatric CFIDS and a collection of newspa-
       tions and events that can have a significant impact on     per articles that have featured children and adolescents
       increasing awareness and understanding of CFIDS in         with the illness. We have also included many articles on
       kids. She was kind enough to grant this interview on the   coping skills for both parents and children. Additionally,
       activities of the Youth Education Committee.               NJCFSA maintains a physician referral list.


       Q    What is the Youth Education Committee?                Q    What programs has the Youth Education Committee
                                                                       participated in?

       A   The committee is comprised of NJCFSA members
           who are advocates for children with CFIDS. Our
       main purpose is to offer support to parents and their
                                                                  A    Since 1998 we have participated in many pediatric
                                                                       education conferences and conventions. We have
                                                                  exhibited at the National Association of School Nurses

      22                                                                           THE CFIDS CHRONICLE SUMMER 2004
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     Convention. We regularly exhibit at         pediatric education packages and         the educational system and the
     the New Jersey Education Associa-           sent them to this select group. Our      accommodations necessary for an
     tion’s (NJEA) annual convention.            package includes copies of A             appropriate education for the CFIDS
     Twice we have conducted a work-             Consensus Manual for the Primary         child is exceptional. In the past, Jon
     shop for school administrators,             Care and Management of Chronic           has served as support group leader
     school nurses, teachers and child           Fatigue Syndrome, published by the       for Bergen County, as president of
     study team members at the NJEA              New Jersey Department of Health          NJCFSA and as treasurer of
     Convention. We have also exhibited          and Senior Services, the Academy         NJCFSA. He currently serves as a
     at the New Jersey Pediatric Nurse           of Medicine of New Jersey and the        consultant to the CFS Advisory
     Practitioners Association confer-           University of Medicine and               Committee to the U.S. Secretary of
     ence, the New Jersey Nurses                 Dentistry of New Jersey. We hope         Health and is chairman of the Board
     Association, the New Jersey League          leading pediatricians will share this    of Directors for the CFIDS
     of Nursing Association’s annual             information with their colleagues.       Association of America.
     conferences and, most recently, at
     the New Jersey School Counselors
     annual conference. These conven-
     tions and conferences allow us to
                                                 Q     Who are the other members of
                                                       the Youth Education
                                                 Committee?
                                                                                          Q     Which other NJCFSA members
                                                                                                and organizations have helped
                                                                                          your committee?
     reach a wide range of medical
     providers and educators whose deci-
     sions impact the daily lives of kids
                                                 A     Committee member Peg Walk
                                                       has been an advocate for pedi-
                                                 atric CFIDS since 1990. Before
                                                                                          A     Other NJCFSA members who
                                                                                                have assisted with projects and
                                                                                          exhibits are Ted Nilson, Jackie
     with CFIDS.                                 becoming ill with CFS, she was a         Niederle, Laura and Beth Warren,
                                                 computer programmer and elemen-          Stephanie Habermann, Teresa

     Q     What other activities does the
           Youth Education Committee
     participate in?
                                                 tary school math teacher with a
                                                 master’s degree in mathematics. Her
                                                 interest in pediatric CFIDS came as
                                                                                          Johnson, Sheila Rosen, Janice
                                                                                          Frank, James Glenn, Sharon Walk
                                                                                          and Lorraine Steefel.

     A    For CFIDS Awareness Day
          2003, we mailed pediatric edu-
     cation packages to Dr. William
                                                 a result of having a child with the
                                                 illness. (Her daughter Sharon started
                                                 the first newsletter and pen pal club
                                                                                              Our committee is also grateful to
                                                                                          the CFIDS Association of America
                                                                                          for providing educational materials
     Librera, the Commissioner of                for children with CFIDS in 1990.)        for each project. We also acknowl-
     Education for the state of New              Peg has been the support group           edge the assistance of the Pediatric
     Jersey, to the superintendent of            leader for Morris County for many        Network website founded by
     schools for each county in the state,       years and can be seen manning our        Rebecca Moore and Mary Robinson
     to members of the New Jersey State          exhibit tables at spring and fall con-   for the many educational articles
     Special Education Advisory Council          ferences. NJCFSA recently elected        they feature on their site. This web-
     and to the five catholic dioceses in        Peg to its board of trustees.            site (http//:www.pediatricnetwork.
     New Jersey. As a result of this mail-            Committee member Jon                org) is invaluable to children with
     ing, we received many inquiries for         Sterling has been an advocate for        CFIDS.
     speakers and exhibitions.                   children with CFIDS since 1992. As


     Q    What did the Youth Education
          Committee do for Awareness
                                                 one of the founding members of
                                                 NJCFSA and our first president, his
                                                 interest in pediatric CFIDS was a
                                                                                          Q     What is the most gratifying
                                                                                                aspect of the work of the
                                                                                          Youth Education Committee?
     Day 2004?

     A    Our main goal for 2004 was to
          educate the state’s pediatri-
                                                 natural consequence of his career as
                                                 a school principal. Jon is a talented
                                                 speaker and has given many lectures
                                                                                          A    If all the exhibiting, education
                                                                                               packages, scholarship pro-
                                                                                          grams and speaking engagements
     cians. Utilizing the website for the        on behalf of children with this ill-     make the lives of children with
     New Jersey chapter of the American          ness. Twice he traveled to Atlantic      chronic fatigue and immune
     Academy of Pediatrics, we found             City to speak at the NJEA                dysfunction syndrome and their
     the names and addresses of the              Convention. He recently exhibited at     families easier, then we have
     counselors and members of its               the New Jersey School Counselors         accomplished our goal.
     Executive Council, Standing                 Convention and gave a talk to teach-
     Committee, Advisory Committee               ers at a school in Passaic County,
     and task forces. We assembled 60            New Jersey. His understanding of

     THE CFIDS CHRONICLE SUMMER 2004                                                                                          23
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               L I V I N G      W I T H        C F I D S

               Perspectives from PWCs


       “That was your old life.”                                                                      BY MARIE TYBUREC, PWC




       T
               he words hit me like a physi-
               cal blow. “That was your old
               life,” Jewel told me.
            I had been explaining to Jewel,
       one of seven siblings, that I wasn’t
       ready to give up. I still intended to
       sing professionally, to work again,
       as I did before that day in 1998
       when I was diagnosed with CFIDS
       and fibromyalgia. I was telling her
       my plans and hopes.
            But before I go on, I must first
       back up to the summer of 1992. I
       was working as a typesetter at a          Marie Tyburec is pictured here (left) with a self-portrait at a 1993 show. The
       newspaper. I enjoyed the work. I          adjacent painting is also a self-portrait. She wishes family and friends would
       was very accurate. I could type 71        realize that the talented and creative person who painted these still exists,
       words per minute for eight hours          waiting to be freed from the constraints imposed by CFIDS.
       and make almost no mistakes. I was
       also a proofreader.
            That summer, due to balance          Fatigue was becoming constant.              argument with my supervisor. I
       problems and dizziness, I went to              I went through a battery of tests.     ended up screaming at her and giv-
       see a neurologist on the advice of        An all-body bone scan, chest                ing my notice for that Friday. (I
       my physician. He found pain wher-         X rays, an EKG, a CAT scan of my            don’t normally scream at people.)
       ever he pressed and told me, “You         lungs, an ultrasound of my                  That Friday—May 22, 1998—I
       have fibromyalgia.” I had never           abdomen, an MRI of my brain (due            went home, not knowing it was the
       heard of it. When he explained what       to an unexplained episode of severe         last day of my working life.
       it was, I wasn’t impressed. I had         head pain in one spot). I also had               The next day was my birthday. I
       been in chronic pain since a 1969         periodic lab tests, the standard ones,      turned 43. The following week, I
       fall from a horse that had twisted        and came to believe the standard lab        struggled to rise from my chair. I
       my pelvis and pushed my neck out          tests aren’t sensitive enough to be         managed to go to a few job inter-
       of alignment.                             useful with PWCs. My doctor                 views that month. I would have a
            Then in 1996 odd symptoms            believed me when I told him my              good day and think, “I’m going to
       began one by one. My ribs hurt. I         symptoms, but the day came when             be okay.” The next day I would be
       had to hold my arms around myself         he gave up and said, “I won’t be the        so weak it was terrifying.
       as I drove the 30 minutes to work         one able to help you.” I appreciated             I applied for Social Security dis-
       every day. I began to have trouble        his honesty.                                ability on June 3, 1998. The process
       concentrating. I experienced numb-             The neurologist who finally            began with a telephone interview.
       ness in my skin and odd headaches         diagnosed my CFIDS in 1998 told             When he asked for my Social
       that came and went. The bottom of         me the onset of the illness occurred        Security number, I broke down. The
       my feet burned in bed. I learned to       much earlier. I now believe I had a         reality hit me. It would take 13
       wear a TENS (Transcutaneous               combination gradual/sudden onset.           months, two failed attempts and a
       Electrical Nerve Stimulation) unit        A traumatic incident occurred at            hearing before a judge to be
       all day at work. When I unhooked it       work shortly before I became ill. I         approved for SSDI. I don’t think I
       at night, I was so exhausted, I           was working as a temp in a difficult        could have won my case without an
       couldn’t rise out of my chair.            situation that culminated in a heated       attorney to represent me. I was too

      24                                                                                   THE CFIDS CHRONICLE SUMMER 2004
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     sick to think straight.                      what I told them.                        Fatigue is constant. The hardest part
          The hardest blow for me was—                 God has been my anchor              about having CFIDS is not knowing
     and is—the profound cognitive                through all the devastation. I have      the prognosis. Will I ever be able to
     impairment that began, for the most          grown closer to God. This is the         function as I did before? Will I work
     part, that summer. I no longer could         only redeeming thing that has come       again? Who would want to marry
     find words. I mixed up word order            out of being sick for six years. My      me? Will I have to live the rest of
     and substituted the wrong word               only social outlet is church. I am too   my life on an income that is below
     unintentionally. My brain felt foggy,        sick to volunteer, and too sick and      the national poverty level?
     confused. My short-term memory               too broke to do the things I enjoy,            Two years ago when my sister
     seemed gone. I could not rely on my          like listening to live music or danc-    said, “That was your old life,” it hit
     mind anymore; I wrote everything             ing. I have not had a date in 10         me hard. I wanted to scream: I’m
     down. For an aspiring writer, with           years.                                   still in here! The person who earned
     17 published poems to her credit,                 Activities that once gave me        a B.F.A. in painting, who took voice
     who had been working on a long               such joy—singing, dancing, writing       lessons with dreams of becoming a
     manuscript, this was devastating.            poetry and oil painting—are now a        professional singer, who could
     My first thought was: Will it ever           great struggle. The triumphs, though     dance for hours—she still exists.
     come back—my ease with words,                rare, are priceless now. Last fall I     Don’t tell me my life is over!
     my dexterity of mind? To date, it            was able to sing two solos at church           I wanted to tell her my dreams
     has not.                                     and to paint two oil paintings that      are still alive. I dream of being mar-
          Then there was the social fallout       were up to my pre-CFIDS ability.         ried to a Christian man, of showing
     of dealing with an “invisible” ill-               Through my physical therapist,      my oil paintings and selling them,
     ness. I remember talking to a staff          I found a doctor who is now my           of finishing the manuscript I began
     person at the doctor’s clinic. I told        best hope. He is a both a medical        and publishing it. I dream of a day
     her I had CFIDS. She responded, “I           doctor and a naturopath, and I’ve        with no fatigue, with no pain. I
     wish I had time to be sick.” A friend        been on his treatment protocol since     dream of being able to think again.
     of mine laughed and said, “I have            2000. He doesn’t take insurance,               But Jewel has fibromyalgia and
     that all the time!”                          and the treatment is expensive, but      she seems resigned to her illness—
          The word devastating doesn’t            he works with me to keep the prices      and to mine. I’m not. The illness
     describe how completely your life is         lower. He has an extensive knowl-        seems to have taken all the fight out
     overturned by CFIDS. Since most of           edge of fatiguing illnesses and is       of her. I’m still fighting, and hoping.
     the damage is interior, people can be        always learning more.                          How many people like me are
     excused at first for not realizing                As I write this, I count the cost   sitting by the window looking out,
     you’re functioning abnormally.               of CFIDS. I am single and 49 years       waiting for research to find a treat-
     What I resent deeply is that after           old. I have not improved except for      ment plan for CFIDS, waiting for a
     explaining the illness and its invisi-       brief periods, after which I return to   chance at a normal life again? Hang
     ble nature to people, even family,           my previous level of illness. My         tough. You’re still in there!
     they don’t believe me, or they forget        cognitive impairment is worse.



     Reprieve                                                                                BY MARY ANNE MITCHELL, PWC

                                                  movement. I have my day all              my hair. Clothing myself only takes

     S
            ince becoming ill with
            chronic fatigue syndrome, I           planned, should I ever be granted a      a minute; no muscle pain or dizzi-
            have grieved for the loss of          reprieve.                                ness slows me down. I run down the
     energy that had been with me since                On this day of reprieve, I open     stairs, two at a time, jumping the
     childhood. On more than one occa-            my eyes and stretch, feeling the         last few to the bottom. The pleasure
     sion, I have found myself planning           blood flowing through my body. I         of breakfast awaits, my favorite
     my first day of freedom from this            jump in the shower, as hot as I can      meal of the day. I think I’ll have
     illness—one day with no emotional            stand it, until the hot water runs       pancakes, thick and heavy, smoth-
     or physical pain, just the sweet,            cold, with no fear of fainting from      ered in real butter and golden syrup,
     exhilarating intoxication of bound-          the extreme temperature and no           and coffee—the strongest, richest
     less health and the exquisite joy of         vertigo and nausea from washing          brew I can make. A far cry from the

     THE CFIDS CHRONICLE SUMMER 2004                                                                                            25
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       simple fare I’m used to consuming.                                                                  In her former life,
            Now for the moment I’ve been                                                                   Mary Anne Mitchell
       dreaming of. I pull my mountain                                                                     and her husband,
       bike out of storage and pump up the                                                                 Klaas, bike along
                                                                                                           the Oregon coast.
       tires. I racked up more than one
                                                                                                           Although she has
       thousand miles on this bike before I
                                                                                                           been housebound
       became ill, and I haven’t forgotten                                                                 for four years, Mary
       the feel of it under me. I pedal                                                                    Anne hopes moun-
       slowly at first, building up a rhythm,                                                              tain biking and all
       getting the feel of the wheel. Then                                                                 the other physical
       as I start to put on speed, I pull                                                                  activities she used
       myself up off the seat and dance on                                                                 to enjoy are part of
       the pedals. I stay with this until I                                                                her future.
       feel a tightness in my lower arms
       and my legs start to burn and twitch.
       The sweat drips into my eyes, and I
       slowly sink back into the saddle. No
       stopping for breaks today, so I drink
       from my water bottle and snack on        in the strong smell of chlorine,         across the faces of the people
       a power bar as I pedal.                  trying not to swallow any while          strolling the walkway. The pleasure
            Back home to another hot            steering around the crowd of young       of being able to sit in a restaurant
       shower, longer than the first one,       kids. I watch their faces as they        for two hours without collapsing,
       savoring the feel of heat against my     prepare to take a dive, that intense     and having a conversation without
       body. Next, I’m off for lunch with       look of concentration and hope and       losing my concentration, is beyond
       my friends. I had to give up restau-     perhaps a little fear before they        description.
       rants because the noise and visual       jump and a grin of triumph spreads            Then, a walk along the prome-
       stimuli threw my immune system           across their faces.                      nade to watch the last rays of the
       into overdrive and sent me to bed             Leaving the pool, I start my        sunset dipping below the horizon as
       with fevers, nausea and muscle           homeward trek on foot. It feels good     we head home. I have one final
       aches. But not today. I’m sharing        to stretch my legs. Halfway home, I      indulgence in store and it’s all about
       lunch with all the people I’ve been      pick up the pace and break into a        sleep. I’m going to curl up in bed
       unable to socialize with for four        jog. The ache I feel in my thighs        after a long, hot bath and drop
       years. We’re a noisy crowd, laugh-       and the quickened heart beat come        instantly into a deep, pain-free
       ing and talking nonstop. I’m quieter     from working my muscles, not from        slumber, with no night sweats or
       than the others, but only because        the basket of symptoms that is my        vertigo to wake me in the darkness,
       I’m drinking them all in, their faces,   illness.                                 just blissful oblivion for eight hours.
       their voices, subtle changes that             Next, dinner. This time I dress          I’m thankful I have retained the
       have taken place since I last saw        up, something that rarely happens        memories of my life prior to
       them. These are the people who           now. We reserved a window seat at        CFIDS. Who knows, one day I may
       didn’t drift away when I was forced      our favorite restaurant, looking out     look back on this time of illness as a
       by my illness to retreat from social     toward the channel, fishing boats        unique experience. Should that day
       activity, and I want to hold them in     heading into harbor, seagulls            ever come, I don’t think I will
       my gaze as long as possible.             screaming in their wake. The sun is      dream for a reprieve from health
            After we part I turn homeward,      just beginning its evening descent,      like I yearn so terribly, so wistfully,
       grab my swimsuit and head for the        casting a lemon and lavender glow        for a reprieve from illness.
       indoor pool. The tingling feeling of
       icy cold water when I first jump in
       jolts through my body and I shud-
       der, goose bumps popping out on
       my arms. Pushing off slowly, I start
       to breast stroke my way across to
       the other side of the pool, breathing


      26                                                                               THE CFIDS CHRONICLE SUMMER 2004
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                                                                                          D C     D I S P A T C H

                                                                                   Your CFIDS Public Policy Report
     BY KIM (KENNEY) MCCLEARY, PRESIDENT & CEO


     CFSAC meeting report                         support of Lauren.                      recommendations that will then be
          The federal government’s CFS                 The committee reviewed draft       directed to Secretary of Health
     Advisory Committee (CFSAC) held              recommendations prepared by sepa-       Tommy Thompson.
     its fourth meeting on June 21, 2004,         rate subcommittees evaluating cur-           The committee also heard two
     in Washington, D.C. The committee            rent education activities and           special presentations. Dr. Donna
     worked on recommendations for                research efforts on CFIDS con-          Pickett of the National Center for
     research and education on chronic            ducted by the National Institutes of    Health Statistics addressed current
     fatigue and immune dysfunction               Health (NIH), the Centers for           classification of CFS in the
     syndrome (CFIDS, also known as               Disease Control (CDC), the Health       International Code of Diagnoses
     chronic fatigue syndrome, CFS,               Resources and Services                  (ICD). While the rest of the world
     myalgic encephalomyelitis and                Administration (HRSA), the Food         utilizes a version of the ICD
     ME), received updates from health            and Drug Administration (FDA) and       referred to as ICD-10, the United
     agency representatives and heard             the Social Security Administration      States uses a modification of an ear-
     public testimony from persons with           (SSA). Dr. Bell led discussion about    lier version, ICD-9-CM. In the ICD-
     CFIDS and their family members.              possible strategies presented by sub-   9-CM, CFS is listed under “Signs
          Chairman of the CFSAC, Dr.              committee chairmen that seek to         and Symptoms” at 780.71—chronic
     David Bell, opened the meeting by            strengthen federally sponsored          fatigue. However, in the ICD-10,
     reading a quote from Dr. Vance               CFIDS research and education of         CFS is indexed to G93.3, a listing
     Spenser’s foreword in the book,              health care providers and the public.   under “Diseases of the Nervous
     Shattered. “For the first time, the          Debate about research funding and       System” along with “benign myal-
     authentic voices of people with ME           review processes was sparked by         gic encephalomyelitis” and “post-
     are heard, their narratives brought          committee member Dr. Kenneth            viral fatigue syndrome.” Codes are
     together expertly into a rich tapestry       Friedman’s submission of a paper        used by physician groups, hospitals
     that highlights the central themes           he titled “Fish or War,” which out-     and insurers to track morbidity and
     which dominate this illness: the lack        lines disparities between research      mortality rates due to various condi-
     of a recognised diagnosis; the scep-         programs for CFIDS and those for        tions. The CFSAC will consider
     ticism of medical professionals; the         other diseases of similar or lesser     among its recommendations
     lack of support from family and              magnitude.                              whether to urge adoption by the
     friends; the deserts of fatigue and               Recommendations for research       United States of the ICD-10 coding
     pain; the loneliness involved in the         and education submitted to the com-     for CFS used internationally.
     search for help and empathy. . . .           mittee by the CFIDS Association              Dr. Dharam Ablashi presented a
     These are not the voices of profes-          can be read at http://www.cfids.org/    series of recommendations from the
     sionals with careers to promote;             advocacy/ research-recom.asp and        American Association of Chronic
     rather they are the voice of real peo-       http://www. cfids.org/advocacy/         Fatigue Syndrome, an organization
     ple with terrible stories to tell.”          education-recom.asp.                    of researchers and providers that
          His selection of this quote was              Dozens of strategies were          fosters research, publishes a
     highly relevant; the public testimony        proposed, discussed and considered,     newsletter and sponsors a biannual
     that followed later in the day               and the committee will work to          research, clinical and patient confer-
     reflected these same themes. Of par-         refine and prioritize those deemed      ence. Invited guests Jon Sterling,
     ticular note were first-time appear-         most worthwhile. Public comment         chairman of the board of the CFIDS
     ances from young-adult PWC                   on the draft recommendations will       Association of America, Jill
     Lauren Bean, her mother, Diane,              be solicited later this summer via      McLaughlin, executive director of
     and Lori Tylutki, a critical care            the committee’s website (http://        the National CFIDS Foundation,
     nurse from Michigan who is on                www.hhs.gov/advcomcfs/index.            and I were permitted to participate
     medical leave due to CFIDS.                  html). At the next meeting, tenta-      throughout the meeting, including
     Lauren’s father and brother were             tively scheduled for September 27,      the lengthy sessions during which
     recognized by executive secretary            2004, the committee will present        committee members discussed draft
     Dr. Larry Fields for attending in            and approve a final list of             recommendations.

     THE CFIDS CHRONICLE SUMMER 2004                                                                                          27
summer 2004 chronicle.qxp    11/19/2004    10:50 AM   Page 28




       continued from page 27                   Department of Health and Human           and function of the committee.
                                                Services are expected regardless of      Further information about the
       NIH representative Dr. Eleanor           the outcome of the November              CFSAC and a roster of its members
       Hanna announced that NIH would           elections; only time will tell the       can be found at http://www.cfids.
       issue a Request for Applications         impact this may have on the status       org/advocacy/CFSCC.asp.
       (RFA) on CFS research initiatives in
       November. RFAs carry a designated
       fund for successful proposals, mak-        Public Witnesses:
       ing them more attractive to prospec-       Diane Bean                             Jonathan Gilbert
       tive researchers than more general         Lauren Bean                            Marly McKibben
       Program Announcements that don’t           Victoria Bell                            (read by Kim McCleary)
       carry set-aside funds. Dr. Drue            Cheri Borsky                           Lynn Royster
       Barrett, alternate representative from     Barbara Comerford, J.D.                Diana Saba
       the CDC, notified the committee            Steven Du Pre                          Mary Schweitzer, Ph.D.
       that a new report from CDC                    (read by Victoria Bell)             Lori Tylutki
       researchers documented an annual
       loss to the economy due to CFS of
                                                                               “Never before have I run up against so
       $9.1 billion. (For more on this study,
                                                                               much opposition and such poor attitudes
       see page 4 of this issue.)
                                                                               towards symptoms as I have with CFIDS.
            The CFSAC’s charter will
       expire on September 5, 2004,                                            I became so disenchanted with the
       although Dr. Fields indicated that                                      medical community, I was ashamed to
       the process to renew the charter is                                     say that I was part of the profession.”
       under way and no obstacles to                                                         —Lori Tylutki,
       timely renewal are anticipated.                                                        critical care nurse
       Changes in the leadership of the




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           the Association.                                         form to the Association.
                                                                    ❑ I have included the CFIDS Association as a
           Please send me further information on:                   beneficiary of my will or other estate plans.
           ❑ Wills and bequests
           ❑ Gifts of stock                                             Call Jamie Davis, Director of Development, at
           ❑ Trusts and other planned gifts                            704-364-0466 if you’d like to discuss making a
                                                                              charitable gift to the Association.



      28                                                                              THE CFIDS CHRONICLE SUMMER 2004
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                      NEVADA PASSES LAW REQUIRING INSURANCE COVERAGE
                                  FOR SOME CLINICAL TRIALS

              Last year the American Cancer Society sponsored
         a bill which will have a historic impact on Nevada
         cancer and CFIDS patients who are involved in clini-
         cal trials. Assembly Bill 502 is now law in Nevada,
         and it requires insurance companies to cover treatment
         for Phase II, III and IV clinical trials for patients with
         cancer or CFIDS. The bill may be a model for other
         states to follow. The final bill includes this language:

             A policy of health insurance must provide cover-
         age for medical treatment which a policyholder or
         subscriber receives as part of a clinical trial or study if:
           a. The medical treatment is provided in a Phase II,
              Phase III or Phase IV study or clinical trail for the
              treatment of cancer or chronic fatigue syndrome;
           b. The clinical trial or study is approved by:               Governor Kenny Guinn (seated) signed the bill into law
              i. An agency of the National Institutes of                in June 2003. Pictured with him, from left to right, are
                                                                        Annette Whittemore, Anita Patton, Harvey Whittemore,
                   Health as set forth in 42 U.S.C. 282(b);
                                                                        Andrea Whittemore, Courtney Alexander, Senator Bill
              ii. A cooperative group;
                                                                        Raggio, Buffy Gail Martin and Senator Raggio’s assistant.
              iii. The Food and Drug Administration as an
                   application for a new investigative drug;
              iv. The United States Department of Veterans              drug that has been used to treat CFIDS since the late
                   Affairs; or                                          1980s. Harvey, a longtime lobbyist in the state capital,
              v. The United States Department of Defense                not only gave moving testimony on behalf of Andrea
           c. The medical treatment is provided by a provider           and his wife, he motivated legislators to recognize the
              of health care, and the facility and personnel            seriousness of CFIDS. Without his efforts the bill
              have the experience and training to provide the           would not have included CFIDS along with cancer.
              treatment in a capable manner;                                 Also testifying in support of the bill was CFIDS
           d. There is no medical treatment available which             advocate Jerry Crum and CFIDS patients Anita Patton,
              is considered a more appropriate alternative              Robert Miller and Carol Reid, who talked about the
              medical treatment than the medical treatment              tremendous financial burden of being in the Ampligen
              provided in the clinical trial or study;                  clinical trials. Accompanying this testimony was a
           e. There is a reasonable expectation based on                petition signed by all of Nevada’s Ampligen patients,
               clinical data that the medical treatment provided        as well as others supporting the bill.
               in the clinical trial or study will be at least as            Credit also goes to the elected officials who led the
               effective as any other medical treatment.                passage of the bill. These include Assemblyman David
                                                                        Goldwater, Senator Randolph Townsend, Assembly
              The bill passed because of the hard work and              Majority Leader Barbara Buckley, Senate Majority
         combined effort of legislators, cancer and CFIDS               Leader Bill Raggio and Governor Kenny Guinn.
         advocates, and CFIDS patients and their families.                   This is the only bill in any state to provide cover-
         Thanks go to Buffy Gail Martin of the Reno chapter             age of clinical trials for CFIDS treatment. Congratula-
         of the American Cancer Society and to oncologist Dr.           tions to Nevada for its leadership in this important
         John Ellerton for creating the bill and laying the             area. We encourage other states to provide the same
         groundwork for its passage.                                    support for CFIDS research and for improving the
              Appreciation is also due to Harvey and Annette            quality of life for patients and their families.
         Whittemore, parents of CFIDS patient Andrea                         Thanks go to Bob Patton for his assistance with
         Whittemore, who has been in trials for Ampligen, a             this article.



     THE CFIDS CHRONICLE SUMMER 2004                                                                                             29
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               M E D I A WAT C H

               Activities and accomplishments of the CFIDS Association of America

       CFIDS featured on talk radio              Hispanic audience                          Taylor and Allison Baldwin were
            AWARE Talk Radio aired a 30-             Recent prevalence studies indi-        interviewed for the story. Baldwin,
       minute program on CFIDS in June.          cate that Hispanic and African             daughter of Association board mem-
       The program, which features health        American populations are at risk for       ber Rick Baldwin, commented for
       care news and treatment updates,          CFIDS. Getting information to these        the article: “I will always need to be
       airs on more than 600 radio stations      audiences is critical. A Florida           aware of this, budget my energy and
       in more than 95 cities. Senior pro-       magazine, Aventura En Español,             balance my life out—but I’ve slowly
       ducer LaVeda Peterlin reported that       recently published a one-page arti-        been finding ways that work for me,
       the program reaches about                 cle on CFIDS called “El Síndrome           and that are allowing me to live
       8,000,000 people.                         de Fatiga Crónica: Un Misterio             life.”
            For the show on CFIDS, the           Médico.”                                        Kim (Kenney) McCleary, who
       producers interviewed an “ordinary”           The article describes CFIDS,           was also quoted in the article, dis-
       patient with CFIDS, a celebrity           with attention given to possible trig-     cusses the overlapping nature of
       patient with the illness—Laura            gers, gender differences, neurally         some chronic illnesses, saying that
       Hillenbrand—and Dr. Jacob                 mediated hypotension, cognitive            receiving a specific diagnosis can
       Teitelbaum, who is a well-known           impairment and sleep abnormalities.        depend on which health care
       clinician and author. The CFIDS                                                      provider a person visits. A rheuma-
       Association was instrumental in           Mainstream press                           tologist may diagnose symptoms as
       helping AWARE Talk Radio inter-               There is more evidence that            fibromyalgia, while an internist may
       view Hillenbrand, and the show            CFIDS awareness is increasing in           diagnose them as CFIDS.
       referred listeners to the Association’s   mainstream publications. In
       website for additional information.       Redbook magazine’s December                In-flight reading
            This radio program is also avail-    2003 issue, a brief overview and                The February 2004 issue of
       able on the Walgreens website at          discussion of CFIDS is included in         Southwest Airlines Spirit featured a
       http//:www.walgreens.com/about/           the article, “Are You Tired—Or Is It       six-page article on CFIDS titled
       community/aware.                          Something More?” The article               “Why Am I Always Tired?” The
                                                 encourages readers who are experi-         article provides a careful overview
       UPI wire story                            encing certain symptoms to see their       of the disease, including information
            United Press International cov-      doctor and ask to be evaluated for         on prevalence, symptoms, diagnosis,
       ered the high price of chronic            CFIDS or fibromyalgia. It is encour-       treatments and current research.
       fatigue syndrome in a wire story          aging to see CFIDS included with                Author Heather Millar profiles
       published June 22. The story cites        mainstream illnesses such as               four PWCs and interviews clinicians
       the CDC study recently published in       diabetes, anemia, depression and           and researchers, including Dr.
       an online journal, Cost Effectiveness     hypothyroidism.                            Leonard Jason (DePaul), Dr. Nancy
       and Resource Allocation, which                                                       Klimas (University of Miami) and
       measures the annual cost of CFIDS         Special interest coverage                  Dr. Veeraindar Goli (Duke).
       to the U.S. economy at $9.1 billion,           Fibromyalgia AWARE published          Association president Kim (Kenney)
       not counting health care costs.           an article on CFIDS in its March-          McCleary is also interviewed and
            Writer Dar Haddix put the cost       June 2004 issue as part of the maga-       quoted in the story.
       in human terms by interviewing            zine’s ongoing coverage of over-
       PWCs Cheri Borsky, John Trussler          lapping conditions. Writer Elisabeth       Workshop coverage
       and Elly Brosius. The Association         Deffner covers symptoms, myths                  The Morehead News published
       assisted Haddix by helping identify       and misconceptions, treatments and         a front-page story on CFIDS and
       the PWCS who were interviewed             the role of the CFIDS Association in       fibromyalgia in October 2003. The
       for the story and by providing back-      promoting research and awareness           story covered a workshop on the ill-
       ground material.                          and in providing patient support.          nesses hosted by the Northeast Area
                                                 PWCs Susan DeRoehn, Shirley                Health Education Center. About 80

      30                                                                                  THE CFIDS CHRONICLE SUMMER 2004
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     people attended the workshop and
     80 more participated through tele-                              AWARDS BRING AWARENESS
     conferencing. Dr. Charles Lapp of
     the Hunter-Hopkins Center in                     Laura Hillenbrand
     Charlotte, North Carolina, was the                    Laura Hillenbrand’s article, “A Sudden Illness,” was
     workshop speaker.                                one of the winners of the 2004 National Magazine
          The newspaper coverage of the               Awards sponsored by the American
     event quotes Lapp as saying,                     Society of Magazine Editors (ASME).
     “Chronic fatigue and fibromyalgia                The annual ASME awards are consid-
     are much more severe than everyday               ered the Oscars of the magazine world.
     fatigue. I call it the pain, brain and           Hillenbrand’s article earned the New
     energy drain.”                                   Yorker and the writer the prize in the
          The article also tells the story of         essay category.
     PWC Fannie Madden-Grider, a                           On conferring this award, the judges
     teacher at Morehead State Univer-                wrote, “In this essay about her long, nearly
     sity who has had the illness since               unfathomable fight with chronic fatigue
     1995. She is trying to start a local             syndrome, Laura Hillenbrand delivers rich, suspenseful, cinematic details
     support group in Morehead,                       and imagery that transport the reader deep into the heart of her night-
     Kentucky, for people with CFIDS                  mare—until it seems you are experiencing her claustrophobic and hor-
     and fibromyalgia.                                rific reality. ‘A Sudden Illness’ champions the importance of respecting
                                                      personal experience as valid (despite an army of ‘authorities’ who work
     Attitudinal shift                                to discredit it) and creates an inspiring testament to the will to live and
         In an article entitled “Sea                  create.”
     Change,” published in the winter                      Hillenbrand, who authored the award-winning bestseller Seabiscuit,
     2004 issue of Bitch magazine, writer             was also named one of Glamour magazine’s 12 Women of the Year for
     Sharon Wachsler explores the                     2003, an honor she shared with CDC director Julie Gerberding and Vera
     changes that have occurred in the                Wang, among others. Vogue named Hillenbrand one of its Extraordinary
     public’s perception of CFIDS since               Women of 2003, along with other luminaries like Renee Zellweger,
     Laura Hillenbrand’s media exposure               Hillary Rodham Clinton and the Dixie Chicks.
     and the publication of her article in
     the New Yorker.                                  Floyd Skloot
         Wachsler writes that the New                     Floyd Skloot often writes about the
     Yorker essay offers “an antidote to              experience of living with CFIDS. He
     decades of misinformed media cov-                focuses on the difficult and challenging
     erage of CFS.” She goes on to                    neurological problems caused by the
     describe the attitudinal shift some              disease. It takes weeks to write short
     PWCs have observed in recent                     passages as he struggles for words and
     months.                                          fights for concentration. Balance prob-
                                                      lems and lack of stamina force him to
     Many thanks to those readers who                 break his day into short work periods.
     help us monitor and respond to                       Clearly, all the effort is paying off—both in awards and awareness.
     media coverage. Please clip articles             Skloot’s latest book, In the Shadow of Memory, continues to win awards
     about CFIDS and send them to:                    and accolades, expanding awareness of CFIDS as the author explores the
     Media Relations, The CFIDS                       personal toll of living in the shadow of this devastating illness for more
     Association of America, PO Box                   than 15 years. The book received the 2004 Independent Publishers Book
     220398, Charlotte, NC 28222-0398.                Award in the category of creative nonfiction/essay. It also was honored
                                                      with the 2004 PEN Center USA Literary Award in creative nonfiction,
                                                      which will be presented in October at ceremonies in Los Angeles. Barnes
                                                      and Noble named the book third-prize winner of its Discover Awards,
                                                      which include a monetary award and publicity for the winning books.



     THE CFIDS CHRONICLE SUMMER 2004                                                                                                31
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                A S S O C I A T I O N             N E W S

               Activities and accomplishments of the CFIDS Association of America

       Association awards research                    Addressing the need for a scien-      ply of energy. In doing so, Snell and
       grants                                    tifically validated test for CFIDS,        VanNess hope to identify possible
            The CFIDS Association is             Dikoma Shungu, Ph.D., of Weill             abnormalities that might point to the
       pleased to announce a commitment          Medical College of Cornell Univer-         origins of many CFIDS symptoms
       of $237,710 to fund pilot research        sity in New York, will use hydrogen        and provide evidence of a possible
       projects for 2004-05—the most             magnetic resonance spectroscopic           relationship between CFIDS symp-
       since 1997. After an intense review       imaging (H MRSI), a brain imaging          tomatology and immune system
       process, three studies were approved      technique very similar to the con-         function.
       for funding beginning in July 2004.       ventional MRI, to study H MRS                   Each of the three studies funded
            We are also negotiating with a       neurometabolites as diagnostic             in 2004-05 gives light to innovative
       fourth research group and hope to         markers for CFIDS. Dr. Shungu’s            directions in the development of
       announce that study in the next           research group will record the levels      methods, markers and treatment of
       issue of the CFIDS Chronicle.             of certain important brain chemicals       CFIDS. We’ll report the progress of
            Brigitte Huber, Ph.D., of Tufts      or neurometabolites in individuals         these investigations in subsequent
       University School of Medicine in          suspected to suffer from CFIDS.            issues of this publication.
       Boston, will study HERV-K18 as a               Prior investigations suggest that
       risk factor for CFIDS. In particular,     refining the H MRSI technique              Social Security disability
       the Tufts group is interested in ana-     could establish a basis for using the      brochure
       lyzing patients who suffer from           changing levels of brain chemicals              Did you know that most attor-
       Interferon alpha (INF-a) associated       as measured by the H MRSI as               neys don’t charge a fee if your
       fatigue. Dr. Huber’s laboratory has       diagnostic markers for CFIDS.              Social Security claim is denied? Or
       shown that Epstein-Barr virus             Results of this project will allow         that most claims are denied twice,
       (EBV) infection, as well as exoge-        researchers to establish not only that     and that perseverance is the key to
       nous IFN-a, activate transcription of     CFIDS has a distinct and abnormal          winning your claim?
       the env gene of Human Endogenous          profile of certain brain chemicals              These facts and many others are
       Retrovirus, HERV-K18. This retro-         compared to the healthy human              detailed in the revised edition of the
       viral gene encodes a class of pro-        brain, but also that its profile is        Association’s free brochure, “Social
       teins, known as superantigens, that       different from that of certain psychi-     Security Disability and CFIDS.”
       is capable of deregulating the            atric disorders.                           The brochure helps you navigate the
       immune system. The purpose of this             The third study, conducted by         complex process of pursuing dis-
       investigation will be to establish        Christopher Snell, Ph.D., and              ability benefits and covers five
       whether a differential distribution of    J. Mark VanNess, Ph.D., both of the        important rules for winning benefits.
       HERV-K18 allele and genotype fre-         University of the Pacific in               It also includes information about
       quencies exists in CFIDS patients as      Stockton, California, will use an          Supplemental Security Income
       compared to healthy controls.             exercise challenge to investigate the      (SSI), as well as advice on choosing
            To do this, Dr. Huber has devel-     pathophysiology of CFIDS. The              an attorney.
       oped a novel technique for geno-          study hopes to clarify the biological           To request your free brochure,
       typing HERV-K env that can be             bases for the symptoms of CFIDS            call the Resource Line at 704-365-
       performed in a reasonable time            and suggest therapeutic interven-          2343 or visit http://www.cfids.org/
       frame and is relatively inexpensive,      tions directed at treating the causes      ecommerce/products.asp?setcate-
       allowing efficient genotyping of          of the symptoms rather than merely         gory=23.
       large numbers of samples. If differ-      treating the symptoms themselves.
                                                      Integrating several scientific        Provider ed website is
       ential distribution is seen in patients
                                                 fields that have traditionally studied     revamped
       suffering from CFIDS, when com-
       pared to the healthy control group,       CFIDS in isolation, they will exam-            Launched in June 2004, the
       this pilot study has the possibility of   ine the physical cognitive responses       redesigned Provider Education
       leading to the development of a           of CFIDS patients to the processes         Project website merges the need for
       clinical treatment for CFIDS.             involved in the production and sup-        provider education with trends in


      32                                                                                  THE CFIDS CHRONICLE SUMMER 2004
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     online education. The site is unique         the course in print, VHS or DVD
     in that it offers accredited provider        formats, receive the Pocket               DID YOU
     learning tools on CFIDS for health           Resource Guide and apply for a            KNOW?
     care professionals in various                Grand Rounds presentation, which
     disciplines.                                 our trainers and consultants give at
                                                                                         The Association places a great
          The site’s most requested tool is       teaching hospitals and other venues.   value on all charitable gifts—
     the online self-study, used by 548                Visit http//:www.cfids.org/       and on all monies raised
     registered participants in 2003 and          treatcfs to learn more about the       through Association dues and
     338 so far in 2004. This module              nationwide impact of the Provider      activities. Careful stewardship
     allows providers to complete the             Education Project, a collaborative     of our financial resources is a
                                                                                         top priority for us. That’s why
     two-hour course for continuing               effort of the Centers for Disease      the Association has a stellar
     education credit at no charge. From          Control and Prevention (CDC) and       record in recent years of keep-
     the site, providers can also request         the CFIDS Association.                 ing our overhead, manage-
                                                                                         ment and development
                                                                                         expenses considerably below
                                                                                         the national average for non-
                                                                                         profit organizations. In 2003
                                                                                         our supporting services ratio
                                  GET INVOLVED!                                          was 14.3 percent—well under
                                                                                         the 25 percent threshold that
             You can help speed progress toward better health for the men,               the best-run nonprofits stay
        women and children living with CFIDS by getting involved in the work             below.
        of the CFIDS Association of America. Here are just a few ways you can            Approximately 25 percent of
        make a difference:                                                               people with CFIDS are
                                                                                         disabled according to recent
                                                                                         CDC studies. Thanks to the
        Build CFIDS Awareness
                                                                                         three-year effort of the CFIDS
             Help amplify awareness among members of the media—and                       Association, the Social
        Congress—by visiting our new Grassroots Action Center at                         Security Administration’s land-
        www.cfids.org. There you’ll find messages you can customize, links to            mark ruling, SSR 99-2p, was
                                                                                         issued in May 1999, making it
        your members of Congress, a directory of local and national press
                                                                                         easier for disabled CFIDS
        people and much more. And when you sign up for our new listserv,                 patients to get federal disability
        we’ll alert you when issues need your attention and prompt you with              benefits.
        text and the other resources you’ll need to help generate a groundswell
                                                                                         The Association’s income from
        of support for increased research, awareness and understanding.                  revenues, grants and donor
                                                                                         gifts was $1.87 million in 2003.
        Support Association Programs                                                     Two-thirds of the income was
                                                                                         from charitable gifts, founda-
            When you join the CFIDS Association, or renew your membership,               tion grants, membership dues
        you share a stake in efforts to conquer CFIDS. Of course, you also               and sales of educational
        receive valuable membership benefits including the CFIDS Chronicle,              materials. The remaining third
        the CFS Research Review, free educational pamphlets and publications             came from government grants.
        and a 10 percent discount on Association materials. Your tax-deductible          Nearly 3,500 donors made gifts
        donation is also essential to strengthening the research, public policy and      to the Association in 2003.
        education programs critical to eliminating the suffering this illness            Gifts ranged from a single
        causes.                                                                          dollar to $95,000.
                                                                                         The CFIDS Association of
        Educate the Medical Community                                                    America is the nation’s largest
                                                                                         and most active charitable
            Good patient care begins with good information. Send us the name             organization dedicated to
        and complete address of one or two health care professionals who need            conquering CFIDS.
        to know more about CFIDS so we can give vital information about
                                                                                         CFIDSLink, the Association’s
        CFIDS diagnosis and management to those on the front lines of patient            monthly e-newsletter, now has
        care. Call the Resource Line at 704-365-2343 with this contact informa-          18,000 subscribers.
        tion, or send an e-mail to cfids@cfids.org.



     THE CFIDS CHRONICLE SUMMER 2004                                                                                        33
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                       ASK THE CEO                                                CFIDS impacts whole
                                                                               families, not just the person
         Q: I’ve been a member of a CFIDS support group for five years.         who is ill. We need stories
         There is so much frustration being expressed about how the
                                                                                  from family members!
         public, and some of our own friends and family, still perceive
         CFIDS. We need to be making better progress on this! What is the
         Association doing on this issue?                                      CFIDS is a life-altering illness, not just for
                                                                               PWCs, but for their families. We think these
         A:     You are hearing the same thing we are. One recent example      stories can help generate empathy and under-
         came at the June meeting of the Chronic Fatigue Syndrome              standing among the general public, legislators,
         Advisory Committee when the need for more public awareness            policymakers and adjudicators in insurance
         was woven into comments from several people on the committee.         companies, HMOs and the Social Security
         Members of the public who testified that day echoed those             Administration.
         sentiments in heartfelt ways. We are also hearing from longtime
         supporters like you that progress is urgently needed on this front.
                                                                               Spouses, children, parents and siblings, please
               While the Association is very proud of many past successes,
                                                                               send us your stories about the PWC in your
         it’s clear that we need to redouble our efforts to educate the pub-
         lic and reach a mainstream audience. In recent months we have         life and tell us how:
         been taking a closer look at what public perceptions really are, we      your spouse’s illness affects the marital
         have been investigating strategies to improve perceptions, and we        relationship
         have been discussing how to generate the needed financial                your mom can’t do the things with you she
         support to accomplish this vital public education goal.                  used to do, such as taking you shopping,
               We hired a nationally known marketing firm to conduct some         cooking supper, going to your sporting
         research that will guide our decision-making progress, and I             events or attending your graduation
         encourage you to read their findings on pages 16-19 of this issue.       your child’s illness has changed the family
         Based on this research, and the long-term goals of the Associa-          dynamic and led to problems with siblings
         tion, we are developing a strategic plan to address both public          the illness has placed such a burden on
         awareness and provider education. Our plans are ambitious, and           the family’s finances that it’s impacting
         we’ll need significant private and/or federal funding to accomplish      daily living and future financial security
         them. As details come into sharper focus and funding is secured,         your sibling, ill with CFIDS, gets the lion’s
         we’ll share this news with you. We are directing attention and           share of your parents’ time and attention
         resources to public education efforts in 2004 and 2005.                      Please send your stories to
                                                                                   Marcia Harmon at stories@cfids.org
                                    K. Kimberly (Kenney) McCleary



       THE CFIDS ASSOCIATION OF AMERICA                                                                                    Nonprofit
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