One of the most common misconceptions regarding ME is the idea that it is psychosomatic. This assumption stems in part from the fact that there is as yet no universally reliable diagnostic test, so it is often diagnosed on the basis of self-reported symptoms following the exclusion of other possible explanations. The problem is compounded by a large and very vocal group of psychiatrists who dismiss biomedical evidence of a physical cause of ME in favour of bio-psychosocial theories, claiming that ME is a form of personality disorder characterised by depression, exercise phobia and false illness beliefs.
Despite official recognition that ME is a neurological disease, the treatments sanctioned on the NHS (anti-depressants, graded exercise and behavioural therapies) have a primarily psychiatric focus, thereby reinforcing the perception that ME symptoms must be ‘all in the mind’. What little money the government spends on research into ME (far less than for many comparable disorders) has overwhelmingly been used to try and justify this psychosocial approach rather than funding the kind of biomedical research that might help to identify a cause or cure.
Patients have responded with outrage, leading to accusations in the press and from psychiatrists that people with ME would rather be incurably ill than accept their illness might have a psychiatric cause. Most patients however, care very little whether the cause is physical or psychiatric so long as researchers uncover the truth so that effective treatments can be developed. In my experience, rejection of the psychosocial model for ME is rarely a kneejerk reaction from patients too ashamed to accept a psychiatric label but rather a considered response to months or years of reading medical literature in a bid to educate themselves about their disease.
Ever since my diagnosis I have tried to keep an open-mind about the cause of my symptoms. I would willingly accept a mental health diagnosis if it meant I could be well again, but I simply cannot find the evidence to substantiate it. While I am not a medical professional and have only a layman’s understanding of the research, the overwhelming weight of evidence I have encountered points to a biological cause.
For the sake of full disclosure I should confess that one of my main sources of information has been the websites of support groups that advocate a biomedical approach. While these sites may not represent an entirely balanced view, my search for answers has by no means been restricted to such sites and while I cannot claim to have read the results of every clinical trial, my searching through medical journals for objective proof of a psychosocial cause have so far proved fruitless. That doesn’t necessarily mean the evidence doesn’t exist (one would hope that psychiatrists would not label symptoms as psychosomatic without extensive clinical evidence to support this approach) but if the evidence does exist, I have yet to find it. Evidence for neurological, immunological, cardiovascular and mitochondrial abnormalities in ME however is pretty extensive. If anyone reading this happens to know of any medical papers or clinical trials that demonstrate a psychosocial cause, I genuinely would be interested to read them.
The few clinical trials I have managed to find so support a psychosocial view have either been much too small to form the basis of any firm conclusions or have been debunked by peer-review as being fundamentally flawed. In fact, psychiatrists who have set out to prove the psychosomatic nature of ME have frequently found the precise opposite results to the ones they predicted. Sir Simon Wessley for example, notorious for his psychosocial theories about ME, compared ME patients and sufferers of rheumatoid arthritis in an attempt to demonstrate the prominent role that personality disorders play in patients with ME. His research found that according to measures of “perfectionism, attitudes toward mental illness, defensiveness, social desirability, sensitivity to punishment (a concept related to neuroticism)” and social or emotional dysfunction, ME patients were no different to those of RA patients who have an undeniably physical cause for their disease. Wessley concluded that “the stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.”
One of the dangers of a psychosocial approach is that it places the onus for recovery on the patient alone so failure to respond to treatment can be seen as non-compliance or evidence of the extent of personality disorders. In the early years of my illness I was told it was psychosomatic by so many people that I started to believe it. I complied with all the recommended treatments, convinced they would help me recover but when they failed to do so (and even made me worse) I was made to believe that I was to blame. I was told that sub-consciously I must be choosing to stay ill or else the cognitive treatments would have worked.
According to the UK media, researchers have received hate mail and even death threats from a small minority of extreme campaigners for expressing psychosomatic theories about the nature of ME. Like most patients, I utterly condemn such actions which can only harm attempts to encourage doctors and scientists into the field of ME research, but I can absolutely understand the strength of feeling that might lead to this. If a patient diagnosed with cancer or type-one diabetes was offered no other treatment than anti-depressants or cognitive therapies it would be seen bysociety as nothing short of criminal and diversion of funds from biomedical research into justification of psychological therapies would only compound the injustice. This wouldn’t be considered acceptable for any other illness and yet that is exactly what is happening for patients with ME. Although cognitive therapies and anti-depressants may have an important role to play in helping patients with any chronic illness learn to live with their condition or manage co-morbid mental health conditions, psychiatric approaches alone simply aren’t going to cure the underlying biological disease.
The simple truth is that, whatever its cause, ME ruins lives. For healthy individuals who fail to see why they should worry about this issue, consider this; ME costs the tax-payer millions of pounds every year in health and social care costs, lost labour and disability payments, a cost that will continue until a cure or effective treatment can be found. If, as the research suggests, ME has a physical, not psychosomatic cause, then the psychosocial approach can only obfuscate the issue, preventing research that might one day lead to a cure, or at least a better quality of life, for people living with this illness. And that, in the end, is all that patients with ME really want.