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
T H E C F I D S
for the CFIDS
A QUARTERLY PUBLICATION OF THE CFIDS ASSOCIATION OF AMERICA ■ SUMMER 2004
it the next
CFIDS is an exercise
enigma. The exercise
that is so beneficial in
chronic illnesses can
actually make CFIDS
Find out how new
helping many CFIDS
patients solve this
summer 2004 chronicle.qxp 11/19/2004 10:49 AM Page 2
Inside This Issue
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.
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.
1 Message to Members
3 Readers’ Forum
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.
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 firstname.lastname@example.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. email@example.com
We believe the name chronic fatigue syndrome is inadequate, misleading and Website:
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:
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
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
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
pathophysiology of the illness.”
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.
CFIDS, its complexity and its devastating impact—was persuaded to recommend a
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
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.
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.
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
K. Kimberly (Kenney) McCleary,
President & CEO
firstname.lastname@example.org THE CFIDS
Director of Development & COO
email@example.com 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
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 firstname.lastname@example.org.
SUBMISSIONS: The CFIDS Chronicle is interested in articles, stories, book reviews and other
Development Project Coordinator
materials on topics of interest to people with chronic fatigue and immune dysfunction syndrome
email@example.com (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 firstname.lastname@example.org. It is the policy of the CFIDS Association of America
not to pay for articles published in the Chronicle.
Front Office Manager ABOUT OUR ORGANIZATION: The CFIDS Association of America, Inc., is a public, nonprofit,
email@example.com 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
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
firstname.lastname@example.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)
and other names. The Association does not endorse products or services, and the ideas expressed in the
Chronicle are strictly those of the authors or quoted individuals. The CFIDS Association of America
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.
email@example.com 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:
■ 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
firstname.lastname@example.org ■ Stimulating high-quality CFIDS research
For general inquiries ■ Improving health care providers’ abilities to detect, diagnose and manage
Jon Sterling, Chairman ■ Providing information to persons with CFIDS and enabling the CFIDS
email@example.com community to speak with a collective voice
Board of Directors
firstname.lastname@example.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
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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
summer 2004 chronicle.qxp 11/19/2004 10:49 AM Page 5
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
and CFS. Only five studies met brain’s ability to plan a response to
stimuli. Cochrane Collaboration: An
inclusion criteria; three were
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
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
summer 2004 chronicle.qxp 11/19/2004 10:50 AM Page 7
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
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
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
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
THE CFIDS CHRONICLE SUMMER 2004 9
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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
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
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
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
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
THE GRASSROOTS ACTION CENTER MIGHT EVEN
BE CALLED “ADVOCACY FOR DUMMIES.”
IT WILL DRAMATICALLY INCREASE OUR
CRUCIAL AWARENESS EFFORTS.
BY MEGHAN BRAWLEY, SUMMER INTERN
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
summer 2004 chronicle.qxp 11/19/2004 10:50 AM Page 15
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
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
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
summer 2004 chronicle.qxp 11/19/2004 10:50 AM Page 17
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
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
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;
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
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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.
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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
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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.”
Information technology manager
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“During my 13 years with the CFIDS
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.”
Former director/producer for ABC News and ESPN
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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
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
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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
Q Which other NJCFSA members
and organizations have helped
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
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?
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
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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
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
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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
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
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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
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
Where there’s a will, there’s a way . . .
to expand CFIDS research, public policy and education
Your will is one of the most effective means of Name
ensuring that you provide for your family and that Address
your assets are distributed as you wish. Many peo-
ple—those living with CFIDS, their friends, family City State ZIP
members and others—have chosen to express their Phone
commitment to ending CFIDS by remembering the
CFIDS Association of America in their wills. E-mail
Gifts by will, or bequests, both large and small, are If you have already included the CFIDS
vital to the Association’s work. And because it’s Association of America in your will, tell us about it
easy to execute or amend a will, a bequest is the and let us express our gratitude for your bequest
most common type of deferred gift received by today. Simply check the box below and return this
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
summer 2004 chronicle.qxp 11/19/2004 10:50 AM Page 33
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 email@example.com.
THE CFIDS CHRONICLE SUMMER 2004 33
summer 2004 chronicle.qxp 11/19/2004 10:50 AM Page 34
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 firstname.lastname@example.org
K. Kimberly (Kenney) McCleary
THE CFIDS ASSOCIATION OF AMERICA Nonprofit
PO Box 220398
Charlotte, NC 28222-0398 PAID
Phone: 704-365-2343 Richmond, VA
FAX: 704-365-9755 Permit 930
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