Wednesday, 13 April 2016

The Misrepresentation of Myalgic Encephalomyelitis in Nursing

By Greg Crowhurst

Re : Roberts D (2016) Diagnosing and managing chronic fatigue syndrome Nursing in Practice 89 

Every nurse has a duty to speak up about wrong practice, or the potential to do harm, I have grave concerns over the serious errors and the misrepresentation of Myalgic Encephalomyelitis (ME) contained in the article "Diagnosing and managing chronic fatigue syndrome".

Last year I was awarded third place in the BJN Nurse of the Year Award, for my contribution to and advocacy for Severe ME. My article “Supporting people with severe myalgic encephalomyelitis” (Crowhurst 2005) is referenced by NICE. In 2006 I represented people with Severe ME in parliament at the Gibson Inquiry (Hooper 2006). I have conducted a national (Crowhurst 2005) and local survey of Severe ME. (Crowhurst 2007) I am the author of "Severe ME, featuring justice for Karina Hansen" (Crowhurst 2013) and "Severe ME, Notes for Carers"(Crowhurst 2015). I have qualifications in Nursing, Counselling , Education and an MA. I have been caring for my wife, who has Very Severe ME, for well over two decades.

1. Wrong application of CFS to ME

The author asserts that "Chronic fatigue syndrome (CFS) " is also known as myalgic encephalomyelitis (ME)"; that is not necessarily true. Precisely what symptoms characterise chronic fatigue syndrome (CFS) is a matter of dispute, as there are many different definitions in use ( Goldin 2016). “ME/CFS” is an umbrella term, subject to many different interpretations, incorporating a wide range of meaning and poorly identified conditions. Hooper (2010) points out : "Amorphous definitions and diagnostic symptom criteria have contaminated study cohorts and corrupted research data ." Nurses need to be aware that this leads to a confusion over who has been studied in any particular research, making any treatment recommendation potentially unsafe; because of the lack of clarity of whom it might have helped or not.

Myalgic Encephalomyeltis is formally classified as a neurological disorder in the International Classification of Diseases (ICD10:G 93.3; WHO 1992). The  tone of Roberts' article, however, with its emphasis upon personality factors, depression, anxiety and behaviour change seems closer to the PACE Trial’s (which the author refers to) definition of “Chronic Fatigue Syndrome”, defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Goldin 2016). This is not a definition of Myalgic Encephalomyelitis.

“CFS”, according to the WHO  is only acknowledged as a colloquial, not an absolute term to represent ME. The ICD separately classifies fatigue syndromes as a behavioural (psychiatric) disorder (ICD 10:F 48).

What the PACE Trial  refers to “CFS/ME” is a condition of “medically unexplained” fatigue that is perpetuated by inappropriate illness beliefs, pervasive inactivity, current membership of a self-help group and being in receipt of disability benefits (PACE Trial Identifier, section 3.9) (Hooper 2010).

ME, which the PACE Trial,  the largest treatment trial in the history of chronic fatigue syndrome,  specifically did not study (Hooper 2011) , is a complex multisystemic metabolic-inflammatory disorder, involving profound dysregulation of the central nervous system , immune system dysfunction, cardiovascular abnormalities, autonomic nervous system dysfunction.

The author's assertion that an "underlying degenerative pathology has not been identified." may be true in the context of "CFS/ME" as defined above, but is wildly untrue in the context of neurological ME.

Decades of denial, by a very powerful psychiatric lobby underpin the author’s observation that the World Health Organization’s classification of ME as a neurological illness is not " universally accepted" ; specifically, I imagine, this means the UK psychiatric lobby ( and all those they have influenced), who have been reprimanded by the World Health Organisation (WHO) for attempting to subvert the ICD definition of Myalgic Encephalomyelitis . ( Marshall E, Williams M 2005)

It was the documented biochemical, metabolic, vascular, neurological and muscle abnormalities in ME patients that led to the WHO classification of ME as a neurological illness. As Carruthers et al (2012) , who explicitly call for the separation of ME from CFS points out, in the most accurate and up to date clinical criteria available, the International Consensus Criteria : “Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease”.

The author's extraordinary claim that "it is the GP and primary care nurses who can determine diagnosis for the majority of cases"; surely shows how she cannot possibly be referring to ME, the tortuous neurological disease, requiring expert assessment and diagnosis. Expert consultant-level input, almost entirely lacking in the UK, is required diagnose a complex neurological disease like Myalgic Encephalomyelitis.

It is very likely that many patients with a generalised CFS label have simply not been adequately investigated or tested and may have curable illnesses or mental health Chronic Fatigue, not Myalgic Encephalomyelitis, at all. Unfortunately the author never actually defines what she means by "CFS", what criteria she is using .

The author writes that “CFS remains a diagnosis of exclusion without a clinical diagnostic test, relying on the recording of significant clinical features and standard investigations, as outlined by NICE.”, however as patient advocate Sally Burch points out in an excellent presentation, the Director of NICE admits that the “Guideline fails to address the real issues in ME/CFS”.(Burch 2015)

Almost all the UK ME Charities condemned the NICE Guideline as unfit for purpose: such was the out- rage and disgust throughout the ME community at the way that NICE had deliberately ignored so much biomedical evidence about ME.

Over twenty renowned ME experts later provided Statements to the Court (Judicial Review of the NICE Guidelines) challenging the validity of the research that NICE used for its Clinical Guidelines. NICE relied on a handful of low quality Randomised Controlled Trials that were methodologically flawed.

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