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

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“This is a major concern given these three points: (1) the large number of severely ill and undiagnosed
patients, (2) the inadequacy of current subjective diagnostic criteria, and (3) the absence of effective, evidence‐
based treatment options”.
The ME Association’s magazine (Issue 110, Summer 2009) carries information on management of ME/CFS
based on the findings of the MEA “Big Survey”, which is a survey of around 3,500 on‐line respondents and
750 paper respondents about management of ME/CFS.
Commenting on the GET aspect of this survey, Professor Christine Dancey from the Chronic Illness
Research Team, School of Psychology, University of East London, states:
“There were fewer people who said they were improved than expected. 512 said that GET made them worse, where 302
would be expected if there were no effect of GET. And only 194 said they remained unchanged, when we would expect
302 in this category. Based on the results of this survey, GET is a risky strategy”.
Patients with ME/CFS know this only too well, but their attempts to bring their concerns to the attention of
those whose job is to support them constantly fall on deaf ears and blind eyes. It seems that too much is at
stake for the plight of patients to take priority over professional reputations and corporate profits.
Professor White’s Presentation in Bergen on 20 th October 2009
Even after the media frenzy that followed publication of a direct link between the retrovirus XMRV and
ME/CFS, Professor White repeated his RSM presentation (see above) virtually unchanged in Bergen,
Norway, on 20 th October 2009 and asserted that immune or viral measures are NOT involved in the
maintenance of the disorder:
http://www.meactionuk.org.uk/Bergen‐Causes‐of‐CFS‐2009‐v2.pdf
http://www.meactionuk.org.uk/Bergen‐Treatment‐2009.pdf
http://www.meactionuk.org.uk/Bergen‐What‐is‐CFS‐2009.pdf
There were also some troubling additions. He said that the risk of major depressive illness in CFS is 7.2%
compared with 2.3% in multiple sclerosis patients and he talked about “endophenotypes”, saying that there
are five different endophenotypes: 1.obese & hypnoeic; 2. obese, hypnoeic & stressed; 3. insomnia & pain
(myalgia); 4. symptomatic, depressed; 5. symptomatic, depressed, insomnia, stressed and menopausal. How
this relates to ME/CFS has not been explained by Professor White.
In Bergen, Professor White said that common factors predispose to all functional somatic syndromes; that
CFS is treated “by helping the patient to remove the barriers to their recovery”; that CBT and GET are cures in
some patients; that the effects of CBT last for five years and of GET for 2 years; that 23% recovered
immediately after CBT; that “those reporting harm with GET had not received appropriately supervised GET and
the diagnosis was uncertain” (a claim which has been demolished by his own studies – see above and BMJ
1997:314:1647‐1652); that beliefs and behaviour change with GET; that “Graded Exposure Therapy changes the
brain more than the body”; that GET changes “the perception of effort” which “normalises with GET”, and that
“CBT and GET should be offered to all patients”.
Of concern is White’s continued insistence that:
• the causes of CFS include female gender, previous mood disorders, childhood trauma and
childhood inactivity