Can anyone legitimately claim they do not “believe” in ME ?

ME is assumed to affect about a quarter of a million people in the UK. Some are mildly affected, some moderately affected and about 25 per cent are believed to be so seriously affected that they are housebound or even bedbound.

Affecting more people than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis,  ME can leave a person as functionally impaired as someone suffering from diabetes, heart failure and kidney disease, and as severely disabled as someone with heart failure, late-stage AIDS, Multiple Sclerosis , or a person undergoing chemotherapy.

Myalgic Encephalomyelitis (ME), has been classified by the World Health Organization (WHO) as a neurological disorder since 1969. Currently it is listed in the International Classification of Diseases (ICD), chapter 6, under Disorders of Brain at ICD-10 G 93.3. In the 1992 revision of the ICD, the WHO approved the term “Chronic Fatigue Syndrome” (CFS) as a term by which ME may be known. The term CFS is coded only to ME at ICD-10 G93.3, hence the composite term “ME/CFS” is often used to denote the disorder. A synonymous term also sanctioned by the WHO is “postviral fatigue syndrome”.

Some people mistakenly think they have ME when in fact they have something else. Many others may have a wrong diagnosis, or none at all. The Centers for Disease Control and Prevention (CDC)  believes that of the estimated one million to four million Americans who have ME, less than 20% have actually been diagnosed.

ME was recognized as a specific disease entity by The Royal Society of Medicine in 1978 and was recognized as an organic disease by the  UK Department of Health in November 1987. 

On the 25th November 2008, the Northern Ireland Minister for Health, Social Services and Public Safety, admitted that ME is "a very real and debilitating neurological condition"

On 23rd February 2010, in an Adjournment debate on ME, Gillian Merron, Minister of State (Public Health), Department of Health, stated:"I want first to put on the record that we accept the World Health Organization's classification of ME as a neurological condition of unknown cause."

On 28th May 2010, Kay Ellis confirmed on behalf of the UK Chief Medical Officer: " The Department's view is that it is important to recognize that CFS/ME is a genuine and disabling neurological illness and health professionals must recognize it as such".

On 19th June 2008, Stephen Atkinson on behalf of the Department of Health confirmed:"I would like to assure you that the Department recognizes CFS/ME as a neurological disease". 

On 11th October 2010, in a debate on ME in the House of Lords, the Countess of Mar asked the Parliamentary Under Secretary of State for Health, (Earl Howe) whether the coalition accepts that CFS/ME is a neurological condition and he replied that the " Government accepts that it is a neurological condition".

On Feb 2nd 2011 Paul Burstow, Minister of State, Department of Health, in response to Ian Swales MP, confirmed that there is :"strong international consensus that CFS/ME is a chronic and disabling neurological illness. I want to stress that it is a neurological illness; it is not a mental health problem " .

On Nov 21 2011,  the Minister for Welfare Reform, Lord Freud, stated that “ the term chronic fatigue syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability”; however, this is referring to the symptoms associated with the condition and is not a reference to its aetiology or classification.”

Even so, doctors and other professionals, even after all this time, still seem free to be able to choose whether or not they  “believe “ in ME, whether or they treat ME as the neurological disease it is , or as a mental health disorder.  As the Countess of Mar outlined on  11th October 2011 : “In desperation, frustration, or perhaps, egged on by periodic dramatic pronouncements from a small group of psychiatrists and eagerly taken up by the media supporting allegations of the spurious nature of this illness, medical practitioners and social workers too frequently resort to incarcerating adults in psychiatric hospitals under Section 3 of the Mental Health Act or, in the case of children, imposing child protection proceedings under the Children Act after accusing their parents of fabricated illness ideation."

In what other illness would this abuse be tolerated ?
The Lived Experience of Severe ME


  1. To answer your question - Gender Identity Disorder. Although things ARE improving for us you still get GPs who refuse to comply with clinic requests to prescribe hormone treatment saying it's against their religion or some such BS. GID is recognised and treated as a medical condition, only we have to be cleared by a local mental health team first, so we end up getting all kinds of rubbish from them. I personally had my treatment held up months because of one such rubbish team. I realise how lucky I am to have the option for treatment, something that doesn't exist for ME in the UK, but the point is that ME is not completely alone in being abused by individuals within the NHS.


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