THESE are extracts from my letter sent to the Chief Medical Officer, Professor Sir Liam Donaldson, appealing to him to think about ME before his retirement in May 2010:

Dear Sir Liam

In 2002, at the end of a three-year inquiry into the dreadfully disabling illness ME (Myalgic Encephalomyelitis) you said, on television, "ME is a real illness for real people ... in the wilderness too long." Your speech had immediate positive impact. The next day people were talking about ME. A person shouted across the street to me: "You know that illness you've got? It's real." ME sufferers had new hope.

But, seven years on, ME has been robbed of its distinct reality and sufferers remain deeply entrenched in that wasteland.

The keystone fault arises from combining ME, which does have postmortem evidence of inflammation of the spinal cord, as a real physiological illness, with several other conditions of varying physical and/or psychiatric origins under one diagnostic label, Chronic Fatigue syndrome (CFS). This pollutes the data set, impeding progress because any conclusions drawn exclude most people with ME. Until we separate this CFS/ME hybrid there will be no trustworthy conclusions about ME.

Sufferers are offered management of their illness with cognitive behaviour therapy (CBT) and graded exercise treatment (GET) – whether it is advisable or not.

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?

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 Nice (National Institute for Heath and clinical Excellence) guidelines, which instructed GPs that CFS is the "preferred" term and advising them to refer patients with CFS/ME to the clinics. Diagnoses of ME 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 ME sufferers. Yet, astonishingly, there are calls for even more funding to expand the service.

The results are plain: people with ME are remaining ill, not returning to work or school and resuming normal lifestyles.

May I plead that, before you go, you re-establish the real identity of ME and re-point the direction sign, via biomedical research, along the right path to the exit marked cure.

Dr John H, Greensmith,

M.E. Free For All. org,

36a North Street,

Downend,

Bristol.