A ninth batch of responses to the NICE CFS/ME Editorial and Review have been published on the Rapid Response pages of the BMJ website (and Dr Speedy finally gets his response published):
EDITORIALS:
Peter White, Maurice Murphy, Jill Moss, George Armstrong, and Sir Peter Spencer Chronic fatigue syndrome or myalgic encephalomyelitis
BMJ 2007; 335: 411-412
All responses to this Editorial can be read here
11] Re: WHO is relieved by NICE?
22 September 2007
Dr Speedy, GP, ME, Place of work: MY BED.
Many things have already been said, but I would like to take this opportunity to add a few things:
The recently finished Gibson Enquiry states that: “In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognising ME as a physical illness in a Private Members Bill, the ME Sufferers Bill, in 1988.”
Furthermore it mentions that “The WHO (World Health Organisation) in Geneva holds an internationally recognised classification that ME is a neurological disease.”
And in February 2004, the then Health Minister (Lord Warner) made it very clear, in a formal written acceptance, “that the UK ACCEPTS the World Health Organisation classification of ME as a neurological disorder.”
And now if you keep that in mind and just read the NICE guidelines on ME again DEAR MR EDITOR. More than a hundred pages and NOWHERE do they mention that ME is a NEUROLOGICAL illness.
NOWHERE AT ALL.
Now I also have a question for all the people who have written excellent responses on this page. I have started a BLOG:
http://niceguidelines.blogspot.com/
Is it alright if I would use some of your comments on my BLOG?? If not or if you have any suggestions, please let me know. My email address is on the right hand side of my Blog. All the patients and carers for patients with ME, all the best.
Can I take this opportunity to thank all the doctors who are working hard and trying to help us. And for Mr NICE, maybe go and visit a few patients with Severe ME, I’m sure you will get a totally different view and you will understand why the Canadian and Australian guidelines* are so much better and also so much more helpful to get the diagnosis right.
*[SOUTH Australian Guidelines (2004) http://sacfs.asn.au/download/guidelines.pdf]
Because remember, people with ME we can’t cure, but the many people who haven’t got ME, see also professor Mirza’s response on
http://www.bmj.com/cgi/eletters/335/7617/446#top, who wrote that 90% of the patients he sees with a diagnosis of ME have something else with fatigue, we can ACTUALLY TREAT. And that sounds a lot better I can assure you.
Competing interests: Bedbound GP with ME.
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12] ME and Psychiatry
23 September 2007
Michael Morris, Retired Psychiatrist Wellington, New Zealand
“The uncertainty inherent in making a diagnosis of chronic fatigue syndrome (CFS) is reflected by the variety of names (such as myalgic encephalomyelitis; ME).”
Many people who have responded, have mentioned the Canadian and Australian guidelines*; both were unfortunately not used by NICE at all.
*[SOUTH Australian Guidelines (2004) http://sacfs.asn.au/download/guidelines.pdf]
A shame really, if you see what an excellent tick list they have produced to enable doctors to (almost) rule this uncertainty or difficulty out. I say almost, because there is no medical condition were we, as doctors, get the diagnosis right all the time.
The other thing I am a bit surprised about, is that the Editorial is written by a professor in psychiatry and the second article in the same BMJ about ME and NICE was written by another professor.
When I Google a bit, this is what I find on his site about him: “The Department of Health Sciences at the University of Leicester is a research-led department with established strengths in epidemiology, medical statistics, social science, public health, primary care, health services research and PSYCHIATRY.”
All really NICE, but why wasn’t someone like Dr Speight the Paediatrician, who has specialised in ME for more than twenty years, or Dr Chaudhuri, the neurologist, who also specialises in ME (and a few other neurological diseases) and who both acknowledge the fact that ME is a neurological disease, as Classified by the WHO, not asked instead to write about ME???
It would have given a much more balanced view if both a Neurologist and a psychiatrist would have written about this subject which is deemed by many as a controversial disease, just as we did with MS for example, when it was still called Hysteria.
Even though I, and many others, think after reading the splendid psychiatric guidelines about ME by Dr Stein, that the psychiatrist ONLY has a role in this chronic neurological disease if patients develop a depression or so alongside their ME.
Competing interests: We as psychiatrists should spend more time helping patients with a mental health problem instead of wasting valuable time and resourches on a neurological illness.
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Both these Rapid Responses were circulated via Co-Cure by Tom Kindlon, Tom added the following note to Dr Morris’s response:
[TK: With regard to the Australian guidelines, as he mentions a tick sheet he must be referring to the South Australian Guidelines which were a shortened adapted version of the Canadian Guidelines (done before the Overviews came out).
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