Re : Diagnosing and managing chronic fatigue syndrome, by D Roberts in Nursing in Practice 89 (2016)
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
2. Wrong focus on behavioural change
3. Wrong emphasis upon mental health issues
4. Wrong approach- i.e. that people will recover, even the severely affected, with a ‘robust approach’
5. Wrong understanding – i.e. “Once severity is fully understood, the person can progress to re-introduce or increase activities they regard as priorities.”
6. Lack of awareness of the literature on severe ME & failings of PACE & FINE trials
The misrepresentation of Myalgic Encephalomyelitis in nursing, by Greg Crowhurst in Stonebird: the lived experience of severe ME, April 2016