From John Greensmith, ME Free for All.org
Your report on Judy Mikovits’s study linking a retrovirus, XMRV, to chronic fatigue syndrome (CFS) (17 October, p 6), along with the longer online article (newscientist.com/article/dn17947), has elicited cautious optimism in people with myalgic encephalomyelitis (ME).
ME has long been written off as malingering or of psychiatric origin, so there are hopes that the study will be replicated and that effective treatments can be suggested. It is widely accepted that CFS and ME are synonymous and interchangeable. In fact, ME is a discrete neurological illness that has been erroneously bundled into the generic CFS diagnostic basket, which contains several illnesses. Psychiatrists admit that these illnesses are heterogeneous and have a variety of causes, yet the confusion over diagnosis creates a situation in which people with ME lose their identity.
In light of the new study, psychiatrist Simon Wessely said that ME lies “somewhere between medicine and psychiatry”. In practice, ME, which should be for physicians to treat, has been swallowed up by the catch-all diagnosis of CFS and dragged into the psychiatrist’s clinic.
The problem arising from umbrella diagnoses can be illustrated by considering the effect that a clear diagnosis of ME would have on the findings of Mikovits’s study. If every one of the 68 subjects in the sample of 101 people with CFS who tested positive for XMRV had a diagnosis of ME one might come to a different conclusion than if it turned out that none or few of them did. For this reason it is crucial to agree a common universal standard to ensure that we are comparing like with like.
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If we use a set of diagnostic criteria more likely to include only people with ME, and insist on the same criteria for every attempt at replication, we would be more likely to achieve valid and reliable results for this condition.
From Hayley Klinger, 25%MEGroup
While people with ME will be delighted to read that a retrovirus could be the cause of their devastating and disabling illness, it is disheartening that the media are still going to the psychiatric profession for sound bites on the subject.
If the discovery proves anything, surely it is to highlight how totally inappropriate it has been to have had psychiatry involved in the study and treatment of ME for so long.
Troon, Ayrshire, UK
Bristol, UK
