Open letter to Professor Sir Liam Donaldson, Chief Medical Officer

Dear Sir Liam, In 2002, at the end of a three-year enquiry into the dreadfully disabling illness M.E. (Myalgic Encephalomyelitis) you said, on television, "M.E. is a real illness for real people ... in the wilderness too long." Indeed, never mind 40 days and 40 nights, some had been in it for more than 40 years. Your speech had immediate positive impact. The next day, people in shops, who had no one in the family with it, were talking about M.E. A person shouted across the street to me, "You know that illness you've got? .... It's real." M.E sufferers had new hope.

But, ironically, seven years on, M.E. has been robbed of its distinct reality and sufferers remain even more deeply entrenched in that wasteland amongst an even greater number of lost souls. This has come about because of a tangled web of bad practices built on a fundamentally rotten foundation that must be unpicked before we can find our way out of this desert.

The keystone fault arises from combining M.E., which does have postmortem evidence of inflammation of the spinal cord, as a real physiological illness but which is not fatigue, nor a psychiatric illness, with several other conditions of varying physical and/or psychiatric origins under one diagnostic label, Chronic Fatigue syndrome (CFS). This has the effect of at least doubling the number of nomads in this wilderness and polluting the data set, impeding progress because it is likely that any conclusions drawn exclude most people with M.E. Until we separate this CFS/ME hybrid, which should never have been wrought, there will be no trustworthy conclusions about M.E. It's a waste of time, money and energy.

All of the wanderers are offered only one route out - management of their illness with Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) - whether it is advisable for them or not. It is perhaps not surprising since a large number of delegates at the various working parties are the same psychiatrists who advise the Government that the best treatments are the ones that they themselves administer. Well they would, wouldn't they? And they have. In 2004, every penny in the research pot was spent on a network of clinics, which offer only these two treatments. And, in 2007, the strategy was enforced by the NICE (National Institute for Heath and clinical Excellence) guidelines, a copy of which was sent to every GP, instructing them that CFS is the "preferred" term and advising them to refer patients with CFS/ME to the clinics (M.E. sufferers don't believe for one moment that this is a process carried out equally by patient and doctor). Diagnoses of M.E. were altered to CFS, even though patients' symptoms had not changed.

The spectacular results claimed for CBT and GET depend on the say-so of advocates and practitioners, unsupported by any independent evidence. The latest review (Twisk & Maes, September 2009) confirms that all the research to date shows that CBT is ineffective and GET makes matters worse for M.E. sufferers. Yet, astonishingly, there are calls for even more funding to expand the service.

Few, if any, voices are heard in opposition. Government ministers are perhaps relieved that they can be said to be offering something rather than nothing. Busy GPs may assume that the NICE guidelines are firmly scientifically based and not even check the literature. Those with any concerns may be remain silent rather than question the medical establishment and patients who have been hurt may be reluctant to say so for fear of being left even more isolated. The wailing and gnashing of teeth is still audible for all but deaf ears.

But, even when advocates and practitioners have talked it up and ignored any criticisms, the results are plain: people with M.E. are remaining ill, not returning to work or school and resuming their normal lifestyles. The bigger bundle of Bedouins can't hide that. Yet, this is the only route that the only camel train is taking. The reason that there is a waiting list is not due to its popularity or success; there is a queue because there is no other choice and reluctant travellers are shoved on board.

So it appears that, although you suggested the journey, you will not be the Moses of Chief Medical Officers to lead us out, while on your watch. But may I plead that, before you go, you re-establish the discrete real identity of M.E., by appointing some independent guides as a balance to the unwise men rushing headlong, not stopping to ask the way from people who may know a better route, who will listen to the unwilling pilgrims still trapped and re-point the direction sign, via biomedical research, along the right path to the exit marked cure.

Yours sincerely Dr John H Greensmith ME Free For All. org 36a North Street Downend Bristol