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

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“Over the twenty years I have had this illness, what has really bedevilled the situation of patients with ME
has been the belief, which has been persistently promulgated, that we are suffering, not from a physical
illness but from an illness belief. This is at the root of all the problems we experience: the lack of resources,
the hostility and disbelief from some doctors, the ignorance and disinterest in our symptoms, the ineffective
treatments, the harmful treatments and in the very worst cases, the imposition of psychiatric treatment
against the patientʹs wishes.
“In 2002 the working group of the Chief Medical Officer said ‘ME is a chronic illness meriting significant
NHS resources’. However, in the same year, an editorial in the Journal of the Royal College of General
Practitioners questioned the validity of the CMOʹs report. It described patients with ME as suffering from
PUPS, persistent unexplained physical symptoms and said: ‘illness belief and behaviour do not amount to
proof of physical causes and there are gains involved in adopting victim status’ .
“At that time, studies had shown reduced blood flow to the brain, decreased uptake of acetylcarnitine in
the brain, increase in choline in the brain, abnormalities in muscle mitochondria and so on. Since then we
have had research showing increased levels of cell death and research in London and Glasgow by Dr Kerr
and Dr Gow using gene expression which has shown upregulated genes in patients with ME. In spite of this
I have been told by a consultant physician who sees many patients with ME that ME is by definition an
illness where there is nothing physically wrong with the patient.
“One of our members was treated in a leading specialist clinic in a London hospital. Her GP was informed that she was
making good progress. He was told that the only problem that remained was her ‘illness belief’.
“Those who promulgate the view that ME is an illness belief have undermined the mutual trust and respect
that should exist between doctor and patient. They have done a great disservice to both patients and to the
medical profession.
“The latest research I have seen was in 2008 by Neary et al in the Journal of Clinical Physiology. This
reproduced earlier research using SPECT scans which showed that blood and oxygen supplies to the brain of
subjects with ME decrease rather than increase after exercise. In spite of this the patients in west London in
the specialist clinic this year have been given material which says that their symptoms are due to lack of
fitness and can be reversed by exercise. The only negative effect they are told about is muscle stiffness which is
described as a normal strengthening of the body.
“ No explanation is given of the malaise, digestive upset, headaches, nausea, sleeplessness and myriad other symptoms
that people with ME experience after exercise. Patients are told there is nothing to stop their bodies gaining strength
and fitness.
“I began by describing the severely affected as the weakest among us. In some ways they are the strongest.
If people climb mountains or sail round the world single‐handed they are praised for it, but to live for many
years with an illness like ME is also a huge feat of human endurance and courage but is seldom recognised
as such. People with ME at all levels deserve to be respected. They deserve to be listened to”.
That patients with ME/CFS continue to be neither listened to, appropriately investigated nor correctly
cared for but effectively abandoned is believed by many to be the shameful legacy of the Wessely
School, and the MRC PACE Trial seems to be part of that legacy.
The reference in Mrs Courtier’s presentation was to the particularly disturbing Editorial in the JRCGP in
May 2002 (“Doctors and Social Epidemics: the problem of persistent unexplained physical symptoms,
including chronic fatigue” by Ian Stanley, Emeritus Professor of General Practice; Peter Salmon, Professor of
Clinical Psychology, and Sarah Peters, Lecturer in Psychiatry, all from the University of Liverpool) which
claimed that “CFS/ME” is a “social epidemic”. Dismissive of the Chief Medical Officer’s Working Group
Report of January 2002, these authors said: