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

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“The second clinical implication of the present study is that recovery is a construction. The percentage of recovered
patients differed depending on the definition of recovery used. It is possible that a patient has another
concept of recovery than the therapist”.
The Penguin English Dictionary defines “recovery” as “regaining health after sickness”.
To most rational people, “recovery” means being restored to previous good health, with the ability to return
to school, work, sport, social activities and hobbies with no ill‐effects. For them, unlike for Peter White,
“recovery” is not a negotiable term.
According to US statistics provided in August 2001 by the Centres for Disease Control CFS Programme
Update, only 4% of patients had full remission (not recovery) at 24 months.
In 2005, the message was clear: “The bitter, unpalatable reality is that ME/CFS patients can be pro‐active,
they can have a good attitude, they can try various drugs and non‐drug interventions, and they can still
remain ill, even profoundly disabled” (The CFIDS Chronicle Special Issue: The Science & Research of
ME/CFS: 2005‐2006:59).
In 2007, the ME Association Medical Advisor pointed out that: “Several research studies looking at prognosis
have been published. Results from these studies indicate that ME/CFS often becomes a chronic and very disabling
illness, with complete recovery only occurring in a small minority of cases. A recent Systematic Review of 14 studies
found a median recovery rate of 7%” (ME/CFS/PVFS: An exploration of the key clinical issues prepared for
health professionals. Drs Charles Shepherd & Abhijit Chaudhuri, published by The ME Association, 2007).
For the Wessely School to offer such people only a management regime that is designed to alter their
(correct) perception that they are seriously physically ill, and to imply that restructured thinking and
incremental aerobic exercise will result in significant improvement (and even full recovery), is believed by
many people to amount to professional misconduct.
ME/CFS causes death
People die from ME/CFS, but not from states of chronic “fatigue” or “CFS/ME” as defined by the Wessely
School.
On 13 th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too
familiar: ‘Though there is only a slight gradient from our house to the main road, it could have been the North face of
the Eiger. I just could not get up it’. He found himself unable to dress; the slightest exertion exhausted him
and it took days to regain his strength. He was irritated by the profusion of psychiatric comment and was
trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28‐30). Brynmor John
suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to
exercise back to fitness.
In 1992, Professor Hugh Fudenberg from South Carolina (a pioneer of clinical immunology and one of the
most distinguished minds in the field, being awarded The Medal of the Institut Pasteur at the age of 32; he
was also a Nobel Prize nominee) stated that there is “a greater death rate than normals in the same age
range” (The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome: ed. BM
Hyde, published by The Nightingale Research Foundation, Ottawa, Canada, 1992: page 644).
This was corroborated 14 years later by Professor Leonard Jason et al, who found that the three most
prevalent causes of death in ME/CFS patients were heart failure, suicide and cancer and that the age of
death is considerably younger than in the general population (Health Care Women Int 2006:27(2):615‐626).