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Showing posts from April, 2016

A 10 point nursing model of practice for patients with Myalgic Encephalomyelitis (ME)

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There is an urgent need  to develop an appropriate  model of practice for patients with  Myalgic Encephalomyelitis (ME). 
Crawford, Aitken and McCagh (2008) found that nurses still respond more positively to patients with Multiple Sclerosis and Rheumatoid Arthritis than patients with ME, which they are more likely to wrongly view as a psychological disorder.
Nurses are not being educated in Myalgic Encephalomyelitis, making it difficult for them to recognise the mistreatment of ME and also making it unsafe for patients with ME to be exposed to a hospital/ medical environment.
A 2009 study (Chew-Graham et al ), for example, found little evidence that Nurses are being taught about ME. One person stated that: “ people probably just look at them and think, oh you know he's just tired all the time: lazy...lazy bastards and wasting doctor's time.'”
A study of the literature reveals an alarming lack of awareness of the seriousness of the disease. Without the appropriate understand…

Always use the correct term to refer to "ME".

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Always use the correct term to refer to "ME", if you do not, then you are actively perpetuating a seriously dangerous state of confusion, denial, oppression, mistreatment and medical neglect leading to death.
Myalgic Encephalomyeltis/ Post Viral fatigue Syndrome (ME/PVFS) is formally classified as a neurological disorder in the International Classification of Diseases (ICD10:G 93.3; WHO 1992).
“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).
“ME/CFS” is an umbrella term, subject to many different interpretations, incorporating a wide range…

The misrepresentation of Myalgic Encephalomyelitis in nursing.

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Re : Roberts D (2016) Diagnosing and managing chronic fatigue syndrome Nursing in Practice 89 http://www.nursinginpractice.com/article/diagnosing-and-managing-chronic-fatigue-syndrome
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, …