The willingness of teenage myalgic encephalomyelitis sufferer Hayley Keen to share her experiences and her generosity in raising funds (Eastbourne Herald, May 29) for the Association of Young People with ME makes a valuable contribution to our understanding of this baffling, complex, neurological illness, which we need because sufferers do not all start or progress in the same way.
A huge majority start with glandular fever (Epstein-Barr virus) but we mustn't be too quick to jump to conclusions about the cause of ME because some appear to have a different origin, perhaps pneumonia, shingles (Herpes), or some other viral infecti
on; or it may have been after a vaccination, like TB, or Hepatitis; or it may have been some toxicity in the environment such as chemicals for crop spraying. And, of course, many get over Glandular Fever, or these other things, with no further problems. This is why biomedical research is so essential to understand the pathogenesis of ME.
As well as improving knowledge about and public perception of ME, it is essential to jettison some myths, once and for all, which are hampering progress towards a cure.
That old chestnut 'Yuppie flu' is dismissive, as well as inaccurate and must go. ME affects both sexes, all age groups and social classes all over the world. Other myths that need dispelling are that ME is a psychiatric illness, attention-seeking, laziness or just a bit of tiredness.
ME is a discrete neurological illness, named in the 1950s, recognised by the world Health Organisation in 1969, for which there is an abundance of evidence to justify its name today. There is, as yet, no cure.
The best medical attention any ME, sufferer can have is the support of a good GP for symptom relief, such as pain or difficulty sleeping or whatever you have. There is no evidence that anything else – orthodox, complementary or radical – works.
Cognitive Behaviour Therapy (CBT) has no enduring benefit for people with ME; Graded Exercise Treatment (GET) makes a majority worse, sometimes irrecoverably so and you'd be better to keep your money in your pocket than invest in any of the others.
The best agreed common sense plan is pacing, which is really doing as much as you can manage without overdoing things and then resting or sleeping as required. But it does require some discipline to stop when you know you should.
I do believe that it is only a matter of time before we get a definitive diagnostic test for ME – maybe a blood test or a scan – just as they did for illnesses like MS, which were once written off or dumped in the psychiatrists' dustbin but it's never going to be soon enough for those people whose lives have been devastated by this extremely disabling neurological illness, which is so much more than mere tiredness and needs to be recognised as such.
Dr John H Greensmith
ME Free For All
36a North Street, Downend, Bristol, BS16 5SW.
drjohngreensmith@mefreeforall.org