Text of letter to The Times:
Failure to keep up with the research on ME/CFS is ‘inexcusable’ |
Our letter to The Times | 8 June 2015
INTENDED FOR PUBLICATION
Dear Editor
Book review by David Aaronovitch: “It’s All in Your Head – True Stories of Imaginary Illness” by Dr Suzanne O’Sullivan
Dr Suzanne O’Sullivan and David Aaronovitch have both fallen into the trap of concluding that medical symptoms that cannot be readily explained are likely to be psychological in origin, or even imagined.
Consequently, people with unexplained medical symptoms are treated, as they often are in the case of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), with behavioural treatments such as cognitive behaviour therapy (where most people with ME/CFS consistently report that they gain no benefit) and/or graded exercise therapy (where around 50% of people with ME/CFS repeatedly report that they are made worse as a result).
Whilst accepting that physical symptoms can be caused by a psychological illness, far too many patients with these unexplained symptoms are now being conveniently lumped together with a dustbin diagnosis known as a somatic syndrome – leaving no incentive to carry out research aimed at finding an underlying cause, or an effective drug treatment. This is bad and lazy medicine.
I have worked in both hospital medicine and psychiatry and have dealt with several thousand people with ME/CFS over the past 30 years. I also have personal experience of this illness following a chickenpox encephalitis. This knowledge and experience has led me to believe that there is a wide range of clinical presentations and disease pathways that come under the ME/CFS umbrella.
This is now supported by solid research evidence that has identified abnormalities involving the brain, muscle, endocrine/hormone and immune systems – with a recent report from the Institute of Medicine concluding that ME/CFS is a serious, complex, systemic disease that can profoundly affect the lives of patients. These are abnormalities that cannot be explained by a wholly psychological model of causation. One consequence of this research is the finding that some people with ME/CFS benefit from the use of Rituximab, an immunomodulatory drug that is normally used to treat the malignant disease lymphoma. A phase 3 clinical trial involving Rituximab in ME/CFS is now in progress.
The continuing refusal by sections of the medical profession and media to read the peer-reviewed research that is being published on ME/CFS is not only inexcusable – it is an important reason why people with ME/CFS are justifiably upset and refuse to accept they have a psychological or imaginary illness when they do, in fact, have a serious neuroimmune illness that is just as genuine and disabling as multiple sclerosis.
The UK ME/CFS Research Collaborative will be holding its annual research conference in Newcastle in October. There will be key sessions covering neuropathology (led by the Chairman of the Medical Research Council’s Neurosciences Board) and clinical trials (including Rituximab). I hope that both author and reviewer will consider attending this meeting where they will discover that ME/CFS is neither unexplainable nor imaginary.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
