To jab or not to jab vaccine jab

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					V ac c inations and M .E .

                             To jab or not to jab?
                             Given that the immune system has been at the centre of suspicion for what may have ‘gone
                             wrong’ to mak e us ill in the fi rst place, whether or not to have vaccinations is a big d ecision for
                             people with M .E . H aving appealed for your ex periences regard ing the effects from a range of
                             vaccinations, H anne S crase d raws together your responses, while also seek ing the views of
                             med ical ex perts, to help you mak e an informed choice about this d iffi cult issue.

                             O u r im m u ne s y s tem h a s a n inh erent            C ou ld m e rc u ry                                      th iom ers a l-conta ining v a ccines s h ou ld
                             ca p a city to recog nis e foreig n m a teria l                                                                   b e rem ov ed a s s oon a s p os s ib le
                             (s u ch a s a n infection or a fl u ja b ),
                                                                                      p re s e rv ativ e be h arm f u l?                       b eca u s e of th e p otentia l ris k of a d v ers e
                             p rod u ce th e a p p rop ria te d efence                In ord er to p rev ent conta m ina tion of               effects from m ercu ry ex p os u re. S im ila r
                             m olecu les or a ntig ens , a nd                         m a ny v a ccines , a m ercu ry -b a s ed                conclu s ions w ere rea ch ed b y th e
                             s u b s eq u ently ‘rem em b er’ th is conta ct          p res erv a tiv e, th iom ers a l, is often a d d ed .   E u rop ea n M ed icines Ag ency a nd
                             for d eca d es . T h is m ea ns th a t a ntig ens        As m ercu ry is tox ic, th e p res ence of               w orld w id e res ea rch inv es tig a ting s a fety
                             ca n b e m ob ilis ed m u ch q u ick er in th e          th iom ers a l in v a ccines h a s b een th e            is s u es rem a ins ong oing . F or m ore on
                             fu tu re s h ou ld a s im ila r a g ent enter th e       focu s of m u ch controv ers y. T h e cu rrent           th is is s u e, s ee th e w ik ip ed ia w eb s ite
                             s y s tem a g a in – in oth er w ord s                   d os e u s ed in th e U K is w ell b elow                lis ted a t th e end of th is a rticle.
                             rend ering u s im m u ne to th e inv a d ing             p erm itted lev els a ccord ing to th e N H S ’
                             b a cteriu m or v iru s .                                ow n d a ta . W h a t cons titu tes s a fe lev els
                                                                                      h a s , h ow ev er, b een p a s s iona tely
                             U nd e rs tand ing th e fl u                              d eb a ted a nd op inions v a ry from “ no
                             v ac c ine                                               m ercu ry ca n ev er b e a ccep ta b le” to
                                                                                      “ tiny a m ou nts h a v e not b een p rov en to                 “My doctor told me
                             H ow ev er, a s th e infl u enz a v iru s es              ca u s e p rob lem s a nd m u s t th erefore b e              w isely to w ork ou t th e
                             ch a ng e from y ea r to y ea r, a new fl u ja b          s a fe.”
                             is neces s a ry a nnu a lly in ord er for a n                P rov ing correla tions , let a lone ca u s a l            odds! A sth ma ca n b e
                             ind iv id u a l to s ta y p rotected . T h e v a ccine   rela tions h ip s , w ith reg a rd s to th e
                             is m a d e from tw o or th ree d ifferent,               b ioch em is try of th e b od y is incred ib ly
                                                                                                                                                     life th rea ten in g , so I
                             ina ctiv a ted form s of th e v iru s in ord er          d iffi cu lt. B u t a s it’s a m a tter of g enu ine               h a d to g o for it”
                             to p rotect p eop le a g a ins t th os e ty p es of      concern a m ong th e p u b lic, th e U S
                             fl u m os t com m on a t th e tim e, a s                  Ins titu te of M ed icine (IO M ) a nd th e
                             d ecid ed b y th e W orld H ea lth                       W H O ’s G lob a l Ad v is ory C om m ittee on
                             O rg a nis a tion (W H O ).                              V a ccine S a fety h a v e b oth ca rried ou t
                                 B eca u s e th e v iru s es ch os en for th e        ex tens iv e rev iew s of res ea rch
                             v a ccine a re ina ctiv a ted , th ey ca nnot            inv es tig a ting a ny link b etw een
                             ca u s e fl u a s s u ch , a lth ou g h th ey m a y       th iom ers a l a nd v a riou s s eriou s
                                                                                                                                               F e e d bac k on th e fl u jab:
                             p rod u ce fl u -lik e s y m p tom s for u p to 4 8       cond itions , e.g . M S , rh eu m a toid                 Th e g ood
                             h ou rs . Accord ing to th e S cottis h                  a rth ritis , d ia b etes , C F S a nd leu k a em ia .
                                                                                                                                               O f 2 0 p eop le w h o w rote ea rlier th is
                             E x ecu tiv e H ea lth D ep a rtm ent, th e              W h ile no s cientifi c ev id ence h a s b een
                                                                                                                                               y ea r to tell u s a b ou t th eir ex p erience
                             infl u enz a v a ccine g iv es 70 -8 0 %                  fou nd s u p p orting a ny a lleg ed link s ,
                                                                                                                                               w ith h a v ing th e fl u ja b , 1 3 h a d no
                             p rotection a g a ins t infection w ith a ny             s om e ev id ence w a s a ccu m u la ted b y th e
                                                                                                                                               rea ction a t a ll or only m inor ones
                             v iru s s tra ins clos ely m a tch ing th os e in        IO M to d is p rov e a link b etw een M S
                                                                                                                                               (s y m p tom s la s ting les s th a n a w eek ). S o
                             th e v a ccine.                                          ons et or rela p s e w ith th iom ers a l.
                                                                                                                                               nea rly tw o-th ird s of th is v ery s m a ll
                                 T h e ch os en v iru s es a re g row n in                H ow ev er, th iom ers a l p res erv a tiv es a re
                                                                                                                                               g rou p of res p ond ents w ere rea s ona b ly
                             p ou ltry eg g s a nd th en k illed                      b a nned in s om e cou ntries d u e to s a fety
                                                                                                                                               ok a y h a v ing th e fl u v a ccina tion.
                             (‘ina ctiv a ted ’) a nd p u rifi ed .                    fea rs , p a rticu la rly in ch ild ren’s v a ccines .
                                                                                                                                                   T h e d ecis ion a b ou t w h eth er or not to
                                 In contra s t, a ‘liv e’ v a ccine h a s s im p ly   T h e U S F ood a nd D ru g s Ad m inis tra tion
                                                                                                                                               b e v a ccina ted is b es t m a d e in th e lig h t
                             b een a ltered to m a k e it les s h a rm fu l.          h a s a ls o recog nis ed th a t s om e ch ild ren
                                                                                                                                               of one’s ov era ll h ea lth a nd g enera l
                             L iv e v a ccines inclu d e ora l p olio, M M R          w h o receiv e th iom ers a l-conta ining
                                                                                                                                               circu m s ta nces . F or ex a m p le, in 2 0 0 4
                             a nd B C G a s w ell a s y ellow fev er a nd             v a ccines m a y h a v e, ov er tim e, ex ceed ed
                                                                                                                                               L ind a h a d a v ery b a d b ou t of fl u
                             one of th e ty p h oid ones .                            fed era l g u id elines for s ing le-d os e
                                                                                                                                               lea d ing to b ronch itis , w h ich left h er
                                                                                      m ercu ry ex p os u re. T h e U nited S ta tes
                                                                                                                                               w ith a s th m a a nd relia nt on inh a lers .
                                                                                      P u b lic H ea lth S erv ice, Am erica n
                                                                                                                                               S h e th erefore d ecid ed to h a v e a fl u ja b
                                                                                      Aca d em y of P ed ia trics a nd v a ccine
                                                                                                                                               th a t a u tu m n: “ T h e injection w a s
                                                                                      m a nu fa ctu rers h a v e now a g reed th a t

                             18    InterAction 57 S ep tem b er 2 0 0 6
                                                                                                                                        Vaccinations and M.E.
Y our stories
                                                                                          medication – including so-called
                                                                                          ‘natural’ remedies. For this reason most
                                                                                          M.E. specialists advise trialling any new
                                                                                          remedy on a fraction of the
                                                                                          recommended dose and, if tolerated,
                                                                                          to build up gradually.
                                                                                             Finally, homotoxicologist Rosemary
                                                                                          Lawrence from Turning Point Clinics
                                                                                          contacted us to say that their clinic
                                                                                          provides a homeopathic flu alternative
                                                                                          to injections in pill form called
                                                                                          Influenzinum, (available to practitioners
                                                                                          via, which also
                                                                                          lists homotoxicologists who can
                                                                                          prescribe it; price £ 15).

 absolutely fine, as was the following         reaction. A key factor in predicting        Ex pert view s vary
 year’s; my doctor told me wisely to          response to immunisations seems to be
 work out the odds! Asthma can be life        the individual’s current state of health    A Canadian review of research
 threatening, so I had to go for it.”         at the time. For instance one member        considering a possible link between
   Similarly Carolyn, who had also            wrote in who had had two markedly           CFS and immunisations (Sleigh et al
 suffered with a nasty flu in previous         different experiences of the flu             2002) concluded that “influenza
 years, decided to have the vaccination       vaccination: the first time when she         immunisation appears to provide
 last November and was fine, too. The          was very ill with M.E. she had              protective antibody levels without
 jab worked and she had a flu-free             subsequently suffered a serious relapse,    worsening CFS symptoms.” However,
 winter, leaving her resolved to have a       while the second jab was given at a         this line of thinking has been contested
 flu jab every year from now on. Jane          time when she felt a lot better and in      by some medics working in the field,
 has had several vaccinations over the        this case she found that the unpleasant     including Drs Charles Shepherd and
 last eight years since getting M.E. and      side-effects only lasted a week.            Betty Dowsett in the UK and US
 explains: “I haven’t had any bad                                                         specialist Dr Paul Cheney.
 reactions – just the normally expected       The homeopathic                                Dr Shepherd, author of Living with
 things like a sore arm or feeling slightly                                               M.E. (Vermillion), is very critical of this
 unwell for a couple of days.”
                                              alternative                                 Canadian review. Among others, he
                                              Two readers wrote about their               points out that the report refutes any
 A nd the not-so-good...                      experiences with trying Ainsworth’s         link between Hepatitis B vaccine and
                                              homeopathic ‘anti-cold and flu               CFS by using results from a one-week
 Unfortunately, four respondents found        remedy’, produced each year based on        follow-up study of 700 healthcare
 that the flu vaccination provoked a           current viruses. Christine explained:       students rather than any longer term
 marked flare-up in their M.E.                 “Every year I drive myself nuts trying to   investigation. Dr Shepherd’s own data
 symptoms, sometimes lasting months,          decide whether to have the flu jab. So       also suggests that “approximately 60%
 while two others felt that having a flu       far I haven’t dared, but recently           of M.E./CFS patients experience some
 jab actually contributed to the onset of     thought I’d try the homeopathic             exacerbation in their fatigue and flu-
 their condition. “The vaccination had        alternative. It says to take one tablet     like symptoms (sometimes quite
 turned being ill with a ‘nameless            four times a day for a fortnight. I took    marked) following an influenza
 condition’ into actual M.E.”, explains       the first four and the next day was          vaccine.” He advises though that: “if
 one member. “At fourteen I had a flu          coughing and spluttering. I felt worse      the vaccination is potentially lifesaving,
 jab. This precipitated a downward spiral     for about a month so didn’t try any         then considerations relating to CFS
 that saw me become very disabled and         more! Ainsworths are a reputable            must take a lower priority.” Specifically
 ultimately receive a diagnosis of M.E.”      company, so I don’t blame them for the      regarding the flu vaccination, Dr
 She then risked a second flu jab eight        reaction; I blame M.E.”                     Shepherd’s advice is: “If a patient has
 years later, triggering a deterioration         However, Tina reported finding this       any medical condition that could be
 which distressingly she hasn’t pulled        homeopathic alternative “really useful”.    severely affected by an attack of the
 out of. Other readers who had                The difference was that this member,        flu, such as heart disease, asthma or
 experienced a bad time following a flu        who obtained the pills from the Royal       bronchitis, the influenza vaccine should
 jab naturally felt that the months of        London Homeopathic Hospital’s               certainly be considered.”
 much worse health outweighed any             pharmacy, took two pills per week with         Interestingly, Dr. Cheney suggests
 advantage offered by protection              3-4 days in between because she was         that: “CFS patients are already
 against catching flu.                         advised that “if taken as a 4-pillule       immune-activated. Many have not
   Confusingly, several people who            dose straight away, it can produce cold     suffered with flu since having the
 reported a bad reaction to the flu jab        symptoms, with sore throat and              disease. We suspect they are so
 had no ill effect from travel                cough.”                                     immune-activated and the anti-viral
 vaccinations. So one shouldn’t                  This clearly illustrates the problem     system so turned on that they actually
 automatically conclude that all              experienced by many people with M.E.        have a relative resistance to at least
 vaccinations will cause the same             of sensitivity to ‘normal’ doses of any     initial infection of common agents.

                                                                                            InterAction 57 September 2006 19

Vaccinations and M.E.

                        Injecting an antigen into a fired-up         closely together makes it difficult to say   Focus on hepatitis B
                        immune system may actually make             which vaccine may have caused a
                        people go into relapse.”                    deterioration, or whether it was the        We received replies from two nurses
                           All the M.E. specialists we spoke to     combined effect.                            and a doctor who became ill with M.E.
                        advised against having immunisations           One reader with M.E. said that she       following immunisation for hepatitis B.
                        while ill with active viral-type symptoms   spread her travel vaccinations over a          Elaine experienced an immediate and
                        (such as swollen glands or temperature)     period of six to eight weeks, starting      violent reaction to the vaccination.
                        unless absolutely necessary. Several of     with her first-ever flu jab. She then had     Although the hospital reassured her
                        you who have written in also say that       hep A, typhoid, tetanus, diphtheria and     that it was most likely a coincidental
                        your consultants have advised not to        polio followed by anti-malarial             bug, sadly she remains very ill more
                        undertake vaccinations unless a             treatment. After two weeks she had to       than two years later. It is important to
                        genuine medical need outweighed any         stop the anti-malarial treatment,           note that before receiving the
                        possible side effects. This refers not      however, because she was starting to        immunisation she had been “very run-
                        only to influenza jabs but also travel       feel very unwell. Sadly, she got            down” due to a heavy workload on
                        vaccines.                                   progressively sicker, resulting in her      night shifts while looking after her
                           This advice is illustrated by Martha’s   worst relapse for many years.               family, having also suffered a nasty
                        case. She explains: “I strongly believe        In contrast, Jane has had several        virus a few weeks earlier. The other
                        that having polio and tetanus               vaccinations since she got M.E. eight       nurse Anne had been well before and
                        vaccinations together at a time when I      years ago, including polio, tetanus,        during the vaccinations but feels they
                        was stressed, depressed, run down and       typhoid, rabies, meningitis, and yellow     contributed to the onset of M.E.
                        underweight contributed to the onset        fever, and has been absolutely fine,         symptoms 6-12 months later.
                        of my M.E.”                                 “only feeling slightly unwell for a            It was also a Hep. B jab which caused
                                                                    couple of days”.                            Dr. Graham Thompson a terrible
                        Mixed reactions to travel                      Gill’s experience was an interesting     relapse, having seemingly recovered
                                                                    one, in that she was “knocked out cold      from M.E. He explains: ”I developed
                        vaccinations                                for six weeks” following a rabies           hepatitis 18 years ago and then M.E.
                        Y our replies with regards to               vaccination but emphasised that she         However, three years later when I
                        vaccinations other than the flu jab          would not have foregone it for any          thought I’d fully recovered, I had a
                        make for a less clear-cut picture. Out of   reason. However she also told us that       hepatitis immunisation, which GPs were
                        11 people who had had a mixture of          when she had this vaccination a second      strongly encouraged to have at the
                        vaccinations (not including hepatitis B,    time, she was absolutely fine.               time. I was feeling fighting fit before
                        which we shall come to later), the             Professor Findley, who heads up the      the jab. Interestingly, it was the
                        reactions can be summarised as              National M.E. Support Centre in Essex,      genetically engineered Engerix, not the
                        follows: five people were made worse;        says: “If I am dealing with serious         viral one we might have expected to
                        four had no or minor reactions; one         fatigue syndrome, I would advise            cause problems. Four days later I went
                        was much better and feels that in fact      against the sort of travel that             down with all the symptoms now
                        the vaccinations “kick-started her          vaccinations are required for, i.e. to      covered by the Fukuda & Canadian
                        limping immune system”; while               tropical and semi-tropical third world-     criteria. This time it took seven years to
                        another considered the vaccinations to      type countries. Travel itself can produce   get back to 9 0% original function
                        have triggered the onset of M.E.            a relapse and if somebody is serious        although I relapsed again a year ago for
                           Clearly our sample of responses is too   about improving their symptoms, then        no known reason.”
                        small to draw any general conclusions.      they should consider alternative types
                        Furthermore the fact that travel            of holidays.”
                        vaccines are generally given quite

                        20   InterAction 57 September 2006
                                                                                                                                  Vaccinations and M.E.
Mixed reaction to                             It is also good advice, where           However in 2002 De Becker et al, in
                                              possible, to spread multiple            looking for possible triggers for CFS,
meningitis jab                                vaccinations over a period of time to   collected data on over 1,500 CFS
Only two people wrote about their             lessen the impact on the immune         patients, and found a small cluster
experience with the meningitis                system                                  (about 5%) in which onset was
vaccination. Jane, who suffered no ill                                                associated with hepatitis B vaccination.
                                              Avoid having vaccinations while you
effects, was feeling reasonably well at                                               In addition, in his 1992 study
                                              have symptoms of ‘active’ viral
the time, though she doesn’t know if                                                  examining the appropriateness of flu
the vaccine was live or not. In contrast,                                             vaccinations in CFS patients, Dr Sleigh
Jo-Anne received a live vaccination and                                               found reports of CFS-related adverse
at first felt much improved, but was         D r N eil Abbot from M.E.                 events after flu jabs, though he related
rushed into hospital five days later with                                              them to “overlap of common, post-
                                            R esearch UK comments:                    influenza immunisation symptoms and
suspected meningitis. Sadly this
heralded the beginning of severe M.E.,      The apparent mismatch between             CFS constitutional symptoms”.
which was to last for six years, though     patients’ reports of development or          What are we to make of all this? The
she has since improved over time. The       worsening of M.E./CFS following           central problem is that adverse effects,
Institute of Public Health in Norway is     immunisation and the research             particularly isolated and (in population
currently investigating at least 70 cases   literature on this matter is quite        terms) rare ones, such as those
of people who are linking their onset       striking. The conventional wisdom         reported by M.E. patients after
of M.E. with taking part in                 among many M.E. patients is that          vaccinations, are hard to identify, and
meningococcal vaccine trials carried out    vaccinations can make them worse (as      even harder to associate with an event
between1987-1994. The results should        illustrated by your survey in some        on a cause-and-effect basis.
be available in the Spring of 2007.         cases), whereas the research literature      The ‘Yellow Card’ system of reporting
                                            barely recognises such reports, or        adverse effects to prescribed
                                                                                      medication (see below) was designed
W eighing up the evidence:                  underplays them.
                                               For example, the larger reviews say,   to make it easier to identify and record
some useful tips                            “There is no evidence of an association   such side effects, though this is
Given how little we understand about        between hepatitis B vaccines... and       recognised to be a very blunt
the immune abnormalities indicated in       Chronic Fatigue Syndrome.”                instrument. However, the fact that this
research on M.E. patients, it’s no easy     (Z ucherman, 2006) and “Upon review       system was recently extended to allow
matter for each of us to work out           of the scientific evidence, none of the    patients (in addition to GPs) to report a
whether the pros outweigh the cons          serious allegations [of side effects of   side effect directly to the appropriate
when it comes to having vaccinations        hepatitis B vaccines] have so far been    authorities is a welcome move in the
for flu, travel or other purposes. All you   confirmed” (Duclos 2003). Smaller          right direction.
can do is weigh up the positive versus      clinical studies tend to report similar
                                                                                      M.E. R esearch U K is a registered
the potentially negative in your            findings in relation to live polio virus
                                                                                      charity with a website at
particular situation carefully. For         immunisation and other vaccinations.
  With regard to travel, try to avoid
  parts of countries or times of year
  when serious infections are present
                                              Further information
  to minimise the need for                      Yellow Card S cheme – to report an adverse side effect from any drug or
  vaccinations                                  vaccination to the Medicines and Healthcare Products Regulations Agency,
  Consider investigating homeopathic            patients can request a ‘Yellow Card form’ from their pharmacy or GP
  or herbal alternatives if you’re drug         surgery, call the Yellow Card hotline on freephone 0808 100 3352
  intolerant. For instance artemesia            (weekdays 10am to 2pm) or download the form and read more about the
  has been used for the last 2000               system at
  years in China and many developing            InterAction ran a ‘Dear Doctor’ column on vaccinations and M.E. in issue
  countries to help prevent malaria             42 (2002; p38-9)
  (available from Biocare, see page
  52), though UK doctors prefer to              Mercury in vaccinations – information and a forum for views about
  rely on pharmaceutical protection             mercury in vaccines can be found at or visit the respected
                                                online encyclopaedia controversy
  People who are generally intolerant
  of medication and/or chemically               H omeopathic alternatives – Ainsworth’s remedy is available from some
  sensitive would seem more likely to           healthstores and chemists or contact the Royal London Homoeopathic
  react badly to a vaccination than             Hospital (NHS Trust) pharmacy on 020 7391 8805.
  those without such sensitivities              N H S D irect – for 24-hour queries call 0845 4647 or visit
  If you find that you catch flu easily  to read responses to FAQ s on vaccinations
  and that this causes a serious                S eeking others’ experiences? Make use of the Noticeboard section in
  relapse in your condition, the                InterAction or the equivalent e-mail service via interaction@
  potential benefits of having a flu jab
  may outweigh any reaction

                                                                                        InterAction 57 September 2006 21

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