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To: Medical Research Council
Keep Psychiatry out of research and trials into ME/CFS in the UK
The Medical Research Council should stop wasting money on psychiatric research into ME/CFS. There is no place for psychiatric research into ME/CFS as a primary treatment for the illness, and a primary cause of the illness, based on the assumption that the illness is caused by false illness belief and de conditioning.
Very often these trials are very poor quality and are unblinded trials using subjective self-report questionnaires as primary outcomes. They also use poor and loose diagnostic criteria to identify patient groups, including the international discredited Oxford criteria which only needs fatigue as a main symptom. Any research into ME/CFS should use the more accurate Canadian criteria or the International consensus criteria which has PEM (post exertional malaise) as a main symptom. It is inappropriate in light of international medical research demonstrating ME/CFS as a biological illness to keep exclusively funding trails into theses poor quality psychological models of the illness and does harm to the patient as well as wasting tax payers money.
Why is this important?
Over the last 30 years the Medical Research Council has exclusively funded psychiatric treatments and trials, into psychiatric management of ME/CFS (using CBT) as a primary treatment.
Theses trials often use very loose and inappropriate diagnostic criteria, such as the Oxford criteria and mix up patient groups in research with people who do not have ME/CFS.
The Institute of health report in the USA recognises ME/CFS as a serious, chronic, complex and multi-system disease and that there is need for more biological research into the cause of the illness. ME/CFS is not a major mood disorder, depressions or anxiety. It is not medically unexplained symptoms (MUS) . It is not a form of Conversion disorder or a Somatic Symptom Disorder (SSD) or any Somatoform disorders. It is not caused by a phobia to exercise or false illness belief and de-conditioning. As the IOM study clearly stated, patients have long suffered from "the misconception that [ME/CFS] is a psychogenic illness or even a figment of the patient's imagination." [p. 2, IOM Report, 2015]. The P2P Report further stated, "Although psychological repercussions (e.g., depression) may accompany ME/CFS, it is not a primary psychological disease in etiology. ... Although focusing on fatigue alone may identify many ME/CFS cases, it does not capture the essence of this complex condition." [p. 5, P2P Report, 2015].
Research by virologist Dr Ian Lipkin at Columbia University (2015) recently published studies involving immune abnormalities in ME/CFS. The UK Medical research council needs to stop funding psychiatric research and trials into ME/CFS, as a primary cause of the illness, as this causes harm to the patients, because it encourages patients to ignore their symptoms and exercise despite mounting evidence that exercise is dangerous for people with this illness. CBT can be helpful for all chronic illness but not when the primary underling reason for the CBT is to change wrong illness belief and encourage vulnerable patients especially children with ME/CFS to ignore their symptoms.
