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

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If in the PACE Trial the Wessely School are assessing patients with chronic “fatigue”, then they cannot
without misrepresentation refer ‐‐ as they do ‐‐ to those patients as suffering from “ME” – those who do
not have ME should not be included in a trial that purports to be studying those who do have ME, and
those who do have ME should not be subjected to incremental aerobic exercise. To claim that the MRC
PACE Trial is studying patients with ICD‐10 G93.3 ME/CFS would seem to be misleading.
The international medical and scientific literature is replete with evidence of the need to distinguish between
ME/CFS and “CFS/ME” or “chronic fatigue”.
Referring to those psychiatrists who conflate “chronic fatigue” with “chronic fatigue syndrome”, one US
physician with over a decade of experience of ME/CFS observed:
“They often fail to distinguish between ‘chronic fatigue’ and ‘chronic fatigue syndrome’. The former is a
fairly common symptom in medical clinics that does have a high linkage to already‐present psychological
problems. The latter is a specific medical condition. Their sloppiness has led to all kinds of trouble and
misunderstandings” (http://www.prohealth.com//library/showarticle.cfm?libid=8142 23 rd January 2002).
In 2000 Anthony Komaroff, Professor of Medicine at Harvard and a world leader in ME/CFS, summarised
the key areas in which ME/CFS differs from psychiatric illness in The American Journal of Medicine:
“Objective biological abnormalities have been found significantly more often in patients with (ME/
CFS) than in the comparison groups. The evidence indicates pathology of the central nervous system and
immune system. Autonomic nervous system testing has revealed abnormalities of the sympathetic and
parasympathetic systems that are not explained by depression or physical deconditioning. Studies of
hypothalamic and
pituitary function have revealed neuroendocrine abnormalities not seen in healthy control subjects. There
is considerable evidence of a state of chronic immune activation. In summary, there is now considerable
evidence of an underlying biological process which is inconsistent with the hypothesis that (ME/CFS)
involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is
time to put that hypothesis to rest”. (The Biology of the Chronic Fatigue Syndrome. Am J Med 2000:108:99‐
105).
Failure by the Wessely School to acknowledge the existence of the cardinal symptoms of ME/CFS means
that, despite their insistence to the contrary, they cannot be studying patients with ME/CFS.
It seems improper for the Trial Investigators to deny the existence and nature of these symptoms by refusing
to allow patients with such symptomatology to be included in the PACE Trial that purports to be studying
the disorder in which those symptoms occur.
Other examples of apparent misrepresentation include the following:
11. According to the PACE Trial literature, doctors “know” that most illnesses have a number of causes and
that this is “probably” true for “CFS/ME”:
“This means doctors prefer not to talk of causes. They use the more accurate term ‘factors’ and they divide up factors
into three types:
• Factors that make someone more likely to get the illness. Doctors call this a PREDISPOSITION
• Factors that bring on the illness in the first place. Doctors call this a TRIGGER
• Factors that stop people recovering from the illness. Doctors call this a MAINTAINING factor”.
Participants are thus not only being patronised but are being told by NHS personnel that, by the same
principle, it is usual for doctors to talk about predisposition, triggers and maintaining factors in all diseases,