Unravelling the mystery of a cruel condition

Posted on 10 May 2011 by Dr John H Greensmith,
ME Free For All.org:

Letter in response to Unravelling the mystery of a cruel condition, Aberdeen Press and Journal, 7 May 2011

Lisa Salmon’s very powerful article for M.E. Awareness Week 2011 (Unravelling the mystery of a cruel condition, Aberdeen Press and Journal, 7 May 2011), movingly illustrated by the case study of Lynn Gilderdale, contains one sentence, attributed to the Chief Executive of Action for ME, Sir Peter Spencer, “most sufferers improve over time”, which triggers a number of questions to be answered if we are to unravel the dreadfully disabling neurological illness M.E. (Myalgic Encephalomyelitis).

We should ask, ‘by “most”, how many?’ and ‘by “get better”, what degree of recovery?’ and hope for answers of considerably more than 51% presumably and resumption of at least some normal working and social life? Esther Rantzen, celebrity mother of M.E. sufferer Emily Wilcox, is on record that 80% of M.E. sufferers will make a recovery, though she does not specify degree of improvement or cite the source of her statistic. It all sounds promising until you hear that at least as many take the opposite view. Scottish TV Doctor, Debbie Wake, says that very few ever recover, very few return to work, though she does not say how few or quote her source either. How can these views be so polarised and the statistics uncertain? The reasons are, firstly, that they are considering different illnesses. It is not merely two separate illnesses but one discrete neurological illness, Myalgic Encephalomyelitis and a collective diagnostic term,
Chronic Fatigue Syndrome (CFS), containing several illnesses, each with different causes, onsets, progress and prognoses, crucially not including M.E. as is often, unjustifiably,assumed, M.E., which is quite separate from the CFS bundle. Secondly, one cannot give a percentage of something unless one knows its total number. No one knows how many people have M.E.(specifically, Myalgic Encephalomyelitis). Even the official Department of Health estimate of the hybrid CFS/ME of 125,000 – 250,000 is based on another guess by the US, Centers for Disease Control. We cannot even say that the number of people with M.E. is surely about the lower range of the estimate because, remember, M.E. sufferers are not even in this basket diagnosis. One can’t count the number of those having something until one decides what one is counting (and eliminating from the count). In the absence of a definitive test for M.E., such as a blood test for Diabetes or a scan for Multiple Sclerosis, the best way to proceed would be to increasingly tighten diagnostic criteria for people with M.E. to exclude other conditions within CFS and then see what these patients have in common, to suggest lines of promising research, leading to suggestions for treatment and abandoning ones that have failed us.

Now that post mortem evidence, not only from Lynn Gilderdale but also fellow M.E. sufferer Sophia Mirza in 2005,has shown neurological inflammation in the same part of the brain, we have biomedical research crying out to be done. Yet there is no attempt being made to separate CFS from M.E., no public funding for promising physiological or genetic research and, apart from a welcome but relatively minuscule proportion of charity funding, research and recommended treatment continues along lines that have been proven ineffective and potentially harmful.

Why M.E. is subject to such defiance of the normal rules and ethics of scientific research applied and demanded in every other field should provoke another series of questions which need to be answered before M.E. sufferers can get the justice and trustworthy answers they deserve.

Yours sincerely
Dr John H Greensmith
ME Free For All.org