MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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• have succeeded in making clinicians fearful in case they may be thought (or worse, to be shown) to
have been taken in by “malingering” ME/CFS patients – as the Medical Advisor to the ME
Association recently said: “a significant number of my good medical colleagues are…reluctant to
get involved with ME/CFS” (http://health.groups.yahoo.com/group/MEActionUK/, 6 th November
2009), which has been translated by the listowner as: “Keep quiet about psychiatry. Keep
quiet on asking for bio‐medical
research. Play the game our way, otherwise don’t speak. Right, guys?”. It is undoubtedly true that most
ME/CFS patients know more about their disease than most doctors, a situation which some doctors
might find humiliating and therefore do not allow it to present itself by referring the hapless
patient into psychiatric care
• have portrayed people with ME/CFS as feckless, suggestible malingerers who are afraid to exercise their
deconditioned bodies (a concept that fails to consider the countless academics, scientists,
clinicians and lawyers who have been forced to lose their cherished careers)
• have mis‐portrayed ME/CFS patients to PACE Trial therapists, which lowers the respect that
therapists should have for their patients
• have instructed therapists to mislead participants by pretending that they believe participants are
suffering from a physical disease when therapists have been taught otherwise
• have taken away participants’ autonomy
• have implied criticism of other medical professionals who do not subscribe to the Wessely School’s
beliefs
• have mis‐portrayed and trivialised ME/CFS as a dysfunctional belief
• have based their model of “CFS/ME” on empty and illogical arguments that have long since
been discredited in the international literature
• have portrayed as established facts what they themselves acknowledge to be
unproven assumptions
• have purloined ideas from other fields that have no relevance whatever to ME/CFS (see
Appendix VI).
In other words, the PACE Trial appears ill‐conceived pseudo‐science and a deplorable waste of UK
taxpayers’ money as well as doing nothing constructive to alleviate the suffering of people with a serious
and life‐destroying disease.
No matter that:
• the WHO has classified ME as a neurological disorder for forty years
• there are over 5,000 published papers demonstrating serious organic pathology in
ME/CFS
• the Royal Society of Medicine accepted ME as a nosological entity in 1978
• the UK Department of Health accepted ME as a physical (organic) disease in 1987
• the British Medical Association issued a statement saying that ME was “a newly recognised disease
and that we are sympathetic to sufferers” in 1988
• people in the UK with ME have been permanently excluded from donating blood since at least
1989 (Guidelines for the Blood Transfusion Service in the UK, 1989: 5.4; 5.42; 5.43; 5.44; 5.410)
• the UK Disability Living Allowance Board accepted ME as a physical disorder in 1992
• the UK Health Minister went on record stating “ME is established as a medical
condition” in 1992
• the UK Chief Medical Officer went in record in 2002 stating that ME should be
recognised alongside disorders such as multiple sclerosis and motor neurone disease
• ME has been classified as a neurological disorder in the UK Read Codes (F286) used by all GPs
since 2003
• the UK Health Minister confirmed that the Department of Health accepted the WHO classification
of ME (ie. as neurological) in 2004
• ME has been included in the UK National Service Framework for long‐term
neurological conditions since its inception in 2005
• ME is accepted to be (as well as being classified by the WHO as) a neurological condition by the
UK Government as recorded in Hansard in 2008,