Diagnosing and treating ME (1)

The heading of Nikki Abela Mercieca’s article (‘When doctors cannot diagnose disorders’, The Sunday Times, August 29), about the difficulty of getting a diagnosis of ME (Myalgic Encephalomyelitis) may be read as an incomplete sentence, to which the consequence could be added: that millions of people, worldwide, are left, as our former Chief Medical Officer Sir Liam Donaldson acknowledged, in the wilderness.

They become isolated because, when all the blood tests to rule out other illnesses have been conducted, further investigation ceases.

Patients are too ill, often housebound or bedridden, to be able to get to the doctor, who has nothing to offer them anyway and the doctor won’t make a house call for the same reason.

Your newspaper might have chosen ‘will not’, rather than ‘cannot’ because some doctors do diagnose ME and then the consequence becomes quite different: patients have a diagnosis that they are genuinely ill, not merely experiencing fatigue, due to over-exertion, which might be remedied by lifestyle changes, and that they are definitely not malingerers, hypo­chondriacs, or attention-seekers.

It also allows doctors and researchers, who do not assume that because a physical cause has not been found so the illness must be of psychiatric origin, the alternative option is that there is an organic one yet to be discovered.

But the fact that Ms Abela Mercieca refers to the doctor who diagnosed Nicola Reiss with ME as “brave” suggests that there is something defiant or rebellious about those who challenge the medical establishment that ME is best thought of as a Chronic Fatigue Syndrome and simply managed with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), a principle which is generally followed, even if there has been no reduction in those remaining ill for decades.

Lamentably, there is no government funding for those wishing to conduct the promising biomedical research which may provide the solution. One would think that a finding as exciting as the presence of a new retrovirus, XMRV, in more than two-thirds of sufferers but only three or four per cent of matched healthy people (Lombardi et al, October 2009), would stimulate trials to discover whether there is a causal relationship and possible treatment by antivirals.

There are some intelligent hypotheses, such as that XMRV might be a catalyst for other viruses lying dormant, or recurring, which might explain, for example, why some people who become infected with Epstein Barr (glandular fever), Herpes Zoster (shingles), flu or other viruses get over them, never to be troubled again, while others have ME, possibly for life.

But the work has had to be largely conducted using private or charitable funding, against a sceptical and sometimes hostile opposition from established psychiatrists, whose theories have never been so contested.

It is debatable whether, as the unnamed doctor in your article asserts, “we cannot endorse what we cannot see”, since we accept other illnesses without perfect knowledge but it is unforgivable to neglect searching for a cause when “what we know for sure is that they are suffering”.