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

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The same leaflet also states: “Medical authorities are not certain that CFS is exactly the same illness as ME,
but until scientific evidence shows that they are different they have decided to treat CFS and ME as if they
are one illness”.
This is a seriously misleading statement, because the Wessely School do not distinguish between the
Chronic Fatigue Syndrome (CFS), myalgic encephalomyelitis (ME) and chronic fatigue (CF) and they ignore
the international research showing that ME/CFS (ICD‐10 G93.3) is not the same as “chronic fatigue” (ICD‐10
F48.0). It seems that no matter how extensive the existing evidence, the Wessely School will continue to
dismiss and/or ignore it because it does not accord with their own agenda of eradicating ME and
reclassifying “CFS” (by which they mean medically unexplained chronic “fatigue”) as a behavioural
disorder.
To combine different disorders ‐‐ a neurological disease (ME / ICD‐10 G93.3), a soft tissue disorder (FM /
ICD‐10 M79) ) and a somatisation disorder (chronic “fatigue” / ICD‐10 F48.0) ‐‐ and then to regard and
manage them as a single psychiatric disorder is a cause for concern because interventions that may be
suitable for those with “chronic fatigue” may be harmful and even fatal for some with ME.
That such a failure to differentiate between disparate disorders runs throughout the PACE Trial is shown by
a job advertisement placed by the Oxford Radcliffe Hospitals NHS Trust (one of the PACE Trial
participating Centres) for a Research Cognitive Behaviour Therapist, which said:
“This is a unique opportunity to learn specialised treatment skills and to participate in a high profile Medical Research
Council funded treatment for patients with chronic medically unexplained fatigue (CFS/ME)”.
ME/CFS is not “chronic medically unexplained fatigue” but a classified nosological entity in which the
pathognomonic feature is post‐exertional fatiguability, not “fatigue” which equates to “tiredness”.
The nub of the problem lies in the criteria used to define “CFS/ME” in the PACE Trial, and indeed in all the
trials concerning behavioural interventions for “CFS” published by the Wessely School to date. On 20 th May
2009, a letter to the New Scientist from Jennifer Wilson summarised the problem:
“In most studies into the efficacy of cognitive behavioural therapy (CBT) and graded exercise therapy (GET), the people
who report in favour of the treatments most likely do not have, nor ever had, ME. They are likely to be suffering from
psychological chronic fatigue, which is very different. The inclusion of people with chronic fatigue in research into ME
muddies the waters. ME sufferers cannot undertake exercise ‐ not even graded exercise ‐ without worsening their
illness. Some of the criteria for including people in studies on CBT/GET exclude the very markers that show someone
has ME, such as the very distinctive symptom of post‐exertional malaise. Reported success stories highlight not those
with ME, but sufferers of the entirely different illness, chronic fatigue” (accessible at
http://www.newscientist.com/article/mg20227090.500‐confused‐over‐me.html ).
When the Wessely School refers to “evidence‐based medicine” (EBM) in this context, they are referring to
the reportedly positive findings in certain controlled trials of cognitive behavioural therapy (CBT) and
graded exercise therapy (GET) aimed at increasing a “CFS/ME” patient’s activity level. However, the
recruitment criteria which they use to identify patients with “CFS/ME” are their own and are not used by
most international researchers: they are regarded as obsolete by medical scientists; they lack diagnostic
specificity and select a heterogeneous patient population, thus their results lack meaningful scientific
interpretation.
As the Wessely School ignore all the clinical signs and much of the key symptomatology of ME/CFS,
focusing on subjective “fatigue”, their data‐set cannot be representative of ME/CFS patients, yet they
repeatedly claim to include and study those who suffer from ME under their own umbrella of “medically
unexplained chronic fatigue”; however, they do not study people with other discrete neurological disorders