It is an unfortunate fact that, despite a lot of research and speculation, we do not yet know the cause or causes of chronic fatigue syndrome or myalgic encephalomyelitis—I hope that noble Lords will not mind if I call it CFS/ME. But the important point is that, whatever the cause, there is no doubt that it is a serious and debilitating disorder, and patients suffer severely from it. I am sure that the noble Countess, Lady Mar, will agree with that, at least.
CFS/ME is not alone in being baffling. We do not know the cause of most cancers and many inflammatory diseases, from arthritis to colitis, from asthma to Alzheimer's, but that lack of knowledge has not stopped us seeking the best forms of treatment that we can muster. Indeed, many of those diseases are treated well, and some are cured, although we do not know the cause. But we seem to have got ourselves into a semantic argument that, to all intents and purposes, is irrelevant to what patients need and want. They want treatment and cure, and need more research into potential causes so that more accurate diagnoses can be made and better treatments developed. Meanwhile, they want the best treatments currently available.
In the old days, when we did not know the cause of a disease, we named it after a doctor or patient—for example, Parkinson's disease or Crohn's disease. If noble Lords will forgive me, I am reminded of the story of the little boy who, when asked what his dog's name was, replied, "I do not know his name, but we call him Rover". Perhaps we would do better to call CFS/ME "Mar's disease" or even "Wessely's disease". As we do not know the cause, I prefer to refer to it as chronic
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fatigue syndrome, because at least the term describes how patients feel.
Myalgic encephalomyelitis suggests that there is an inflammation of the brain, when there is no evidence that patients' brains are any more inflamed than anyone else's. I certainly would not focus any arguments on the issue. Indeed, most authorities now seem content with the term CFS/ME—sitting on the fence.
Be that as it may, most of those in the field who have studied the disease agree that, as with every other illness, there is likely to be a mixture of physical and psychological disturbances. To deny that patients may be depressed when they have a chronic long-term debilitating illness seems to fly in the face of experience. Just as it would be unwarranted to deny a depressed patient with cancer or rheumatoid arthritis an anti-depressant, so it would be unwarranted to deny an anti-depressant to a patient with CFS/ME who is also depressed. It is quite different from suggesting that depression is the cause, because it clearly is not.
I hope that noble Lords will forgive me for going on about the issue, but there is a tendency to believe that it is somehow a betrayal of patients even to admit a psychiatric component in the suffering of patients with CFS/ME.
I cannot subscribe to that view because I know that there is always a psychological component in every illness, even if it is only a response to that illness. That is not to deny that there may be physical components in CFS/ME—almost certainly there is—but the problem is that, at present, we do not know what it is, or what they are.
Efforts to uncover an inflammatory, infective or immunological cause have given tempting glimpses, but nothing clear has emerged. Clearly, more research is needed. Perhaps equally unfortunately, no new treatments based purely on those types of possible causes, and that make any difference, have emerged. Antibiotics, antivirals, vitamins, supplements, anti-inflammatory drugs and even steroids do nothing unless they are specifically indicated.
Despite anecdotes to the contrary, I am afraid that the only treatments that have shown any benefit in large-scale carefully controlled clinical trials are: cognitive behaviour therapy, which involves a careful, encouraging confidence-building effort with slowly increasing exercise based on what patients can achieve, without symptoms at the time; and antidepressants, if the patient is also depressed—it is no wonder that many are. Those are currently the only treatments shown to be effective. Many—but, unfortunately, not all—patients are helped by that approach.