Not this time, Evening Leader! I can say, without fear of contradiction, that Petra Barnby's article (Mother's ME battle inspires Alex to take on 940-mile trek), is the most accurate and up to date piece of reporting about ME – ever.

It is, as you say, Myalgic Encephalomyelitis (myalgic, meaning the muscles; encephalo, meaning brain and spinal cord and - it's meaning inflammation) and not chronic fatigue. The overwhelming feeling of lethargy in ME is not brought on, as normal fatigue is, by expending physical and mental energy but is omnipresent for no such expenditure of effort; nor is it repaired by any amount of sleep, as normal tiredness is. There is also an unusually long period of recovery needed after even the slightest effort ("post-exertional malaise") and a whole range of symptoms – including muscle pain, poor concentration and dizziness – that the word "fatigue" alone does not cover.

It is, as you acknowledge, a neurological illness, as recognised by the World Health Organisation (WHO). It is NOT a psychiatric illness. There is no greater incidence of psychiatric history amongst ME sufferers than in the general population.

As you appreciate, the millions of pounds being spent on management techniques, keeping ME sufferers ill, should be spent on biomedical research, to find the physical cause of ME which should, in turn, suggest appropriate treatments to get them better.

Many ME organisations were disappointed to see that the NICE (National Institute for Health and Clinical Excellence) guidelines continue to recommend two treatments, one of which, Cognitive Behaviour Therapy (CBT), has no lasting benefit for people with ME and the other, Graded Exercise Treatment (GET), after which all patients feel worse, some irrecoverably so.

Although, the guidelines suggest the patient should be able to choose and be an equal partner in the treatment process, it was never realistic that ME sufferers would refuse the authority of the therapist or ask for treatment to stop, if they felt uncomfortable or worse.

Less than a month from publication, we are hearing that doctors, in all parts of the country, either haven't read, or are breaking, the guidelines by advising vigorous, unsupervised, exercise at the gym, for example; or making consultations with ME specialists conditional on attendance at clinics.

Nevertheless, yours is a great step forward in ME Awareness, which the whole ME community will welcome.

Dr John H Greensmith
ME Free For All. org
United Kingdom