From the Daily Telegraph, 29 August 2011 (comment by Max Pemberton).
That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.
It might seem strange that a group of doctors would be subjected to harassment, bullying and death threats for attempting to help people. Even more baffling if the death threats should come from the very people they were trying to help.
Yet earlier this month, Prof Simon Wessely, a doctor and pioneering researcher into ME (myalgic encephalomyelitis), disclosed that he and other scientists working on the condition had received death threats from a small group of protesters who have ME. In addition, the protesters have made complaints to the General Medical Council, universities and ethics committees – all of which have been proved to be baseless – in an attempt to disrupt further work.
The reason for their behaviour is that research is focusing on the psychological basis of the condition; as a result of the findings, ME is now considered to have a significant psychiatric component. While the protesters represent only a tiny fraction of those with ME, it is true to say that many others feel strongly about the suggestion that it has any basis in psychology at all.
Symptoms of ME include extreme fatigue and muscle pain. Sufferers are sometimes bed-bound or have to use wheelchairs. Many claim that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers, who feel frustrated and angry that doctors remain sceptical that this is the actual cause.
The ME Association, while condemning the death threats, said that sufferers have a justifiable complaint, as almost no ongoing government-funded research is looking into the bio-medical basis of the disease. Yet research is being carried out into the viral aspect, with the Medical Research Council backing a recent study into precisely this.
In addition, years of research have already been undertaken, which has produced underwhelming, inconclusive results to support a biomedical cause. It wasn’t until psychiatrists such as Prof Wessely started treating the condition psychologically that real progress was made.
The current gold standard for treatment, as supported by the National Institute for Healh and Clinical Excellence (Nice), is a combination of supervised exercise and talking therapies. A major British trial published in The Lancet found that at least one in three patients with ME improved or recovered using this approach. The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist.
Most people are more than happy to be seen by any specialist – more than one if required. If you have a painful knee, for example, you might be seen by a rheumatologist and an orthopaedic surgeon. The involvement of representatives of both these specialities would never be regarded as evidence that you were not believed, or that your welfare was being undermined.
Microbiologists and immunologists have been unable to help ME patients, and so psychiatrists have become involved. But that is considered outrageous. People refuse to go to outpatient appointments and refuse treatment, despite evidence that it works. Accusations are thrown around that the medical profession is not taking them seriously. But, just because doctors frame a condition in terms the sufferer does not like, does not mean doctors are not taking it seriously. That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.
It’s an attitude that dogs the lives of many people living with mental health problems. Yet, for me, a psychological explanation is a very real one. It doesn’t mean someone is faking it; it doesn’t mean the illness doesn’t exist. It also doesn’t mean that people should be able simply to pull their socks up and get better, or that it’s under conscious control. However, it is testament to the complexity of the brain that the mind is capable of such stark physical symptoms. As a model for understanding a condition, it’s as valid as any other.