Not only has Karen Steel bagged the best title for an article about ME ('Tired just doesn't come close to ME', Echo, April 17), she has, in telling the story of ME sufferer Chris Aldis, given the most accurate account of this dreadfully disabling illness I have ever seen in a newspaper for general readers, who may not have experienced it before.
Chris meets all the diagnostic criteria for ME (Myalgic Encephalo-myelitis): an overwhelming feeling of lassitude, which does not present like fatigue usually does and is not refreshed by any number of hours of sleep; very slow recovery after quite m
inuscule effort ('post-exertional malaise'); cognitive problems, dizziness and he is prone to relapse if he overdoes things when feeling a little better.
Although Chris says he was depressed, he was probably more likely, understandably, fed up by being unemployed, discriminated against, possibly disbelieved, and at the lack of social contact due to the illness, which seems to be have been fixed by a sympathetic employer.
ME sufferers, doctors and researchers will recognise it and say this is exactly what ME is and that it is not fatigue, nor a psychiatric illness.
So, it would seem logical to publicly fund research, to understand the cause of what ME is, with the aim of finding a cure and getting adults back to work and children back to school, thus saving on benefits and home tuition, rather than to waste money on what we already know ME is not.
Unfortunately, a report by NICE (National Institute for Health and Clinical Excellence) published in August 2007, recommends the opposite approach.
ME sufferers are referred to one of a network of clinics, which cost millions of pounds to establish, for two treatments, one of which, Cognitive Behaviour Therapy (CBT) – which was developed for psychiatric illnesses, such as anxiety and depression – has no lasting benefit for people with ME, and the other, Graded Exercise Treatment (GET), which leaves some irrecoverably worse after it.
Meanwhile, promising biomedical research projects are turned down by the Medical Research Council (MRC) and have to rely on charity.
This policy, which leaves people with ME languishing ill and starves research projects which may help them to get better, shows no signs of changing.
Thank you for increasing public awareness of ME among your readership in Haverhill.
Dr John H Greensmith,
ME Free For All.org,
36a North Street,
Downend,
Bristol.
The full article contains 408 words and appears in Haverhill Echo newspaper.
