The MEA has sent in the reply below to an article in the current issue of the New Scientist magazine:
INTENDED FOR PUBLICATION
RE: started off as 'When illness is mostly in the mind' but later changed to 'How people can think themselves sick' - 11 March issue of NS by Clare Wilson
As a doctor with no mental health problems who developed ME/CFS as a result of a chickenpox encephalitis I can fully understand why people with this illness feel so angry when it is flippantly described as '...almost all in the mind' or 'How people can think themselves sick'.
Having an inaccurate or derogatory psychosomatic label attached to a condition creates all kinds of practical problems for patients - inappropriate or harmful treatments and refusal of certain benefits in particular - as well as discouraging biomedical research into the underlying cause.
Fortunately, there are clinicians and researchers who believe that ME/CFS has a solid physical basis involving infection, immunology, endocrinology and neurology. As a result, the Medical Research Council has just set up an Expert Group to look at these areas of causation.
When it comes to treatment, The ME Association has just completed analysing the results from the largest survey of patient opinion ever carried out (4,000+ respondents). Not surprisingly, these results clearly show that over 50% report that behavioural treatments such as cognitive behaviour therapy (CBT) and graded exercise therapy (GET) are either ineffective or harmful.
So please can the New Scientist return to the more objective position it took in 2006 (1) when it reported on neurological abnormalities in the spinal cord (ie dorsal root ganglionitis) in a 32 year old woman who died as a result of having ME and in 2005 (2) when it reported in abnormalities in gene expression - neither of which could possibly be caused by abnormal thought processes.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
7 Apollo Office Court
Buckinghamshire MK18 4DF
(1) Hooper R. First official UK death from chronic fatigue syndrome. New Scientist, 16 June 2006.
(2) Hooper R. Chronic fatigue is not all in the mind. New Scientist, 21 July 2005