Information about NICE committee members

Thanks for your comments @Barry , but I think you might be underestimating what MUS is. You could best compare it to Finks bodily distress syndrome (BDS): a broad diagnostic category that would engulf all the knowledge we have of ME/CFS.

A BPS’er can accept ME/CFS as a distinct clinical entity. They can accept that it causes extreme exhaustion or PEM that is usually not seen in other diseases, even though they propose a demeaning psychogenic theory with overemphasis of behavioral and cognitive factors.

Someone promoting MUS denies the relevance of ME/CFS as a distinct clinical entity and promotes the view that there is no underlying unknown pathology doctors should be aware of in providing healthcare. I other words everything we know of ME/CFS (PEM, extreme disability, the fact that CBT/GET doesn’t work etc.) is considered irrelevant, because these MUS-proponents only speak of interventions that apply to the broad MUS -category. And that’s a very broad category. Burton wrote:

“Up to one in six GP consultations is for MUS , 2% of adults repeatedly consult with MUS and between 30% and 50% of symptoms referred to specialists turn out to be ‘medically unexplained.”​

That's a lot of people. To say there’s no clear division between these common unexplained complaints and the horror ME/CFS causes is almost to say there is no ME/CFS at all. So appointing someone like Chris Burton to the NICE ME/CFS committee is a bit like letting a climate change denier work out strategies to tackle global warming. The NICE guideline is about informing healthcare workers about what is known about the diagnosis and management of ME/CFS. As a MUS-promotor, Burton has consistently minimalized the need and relevance of such information.

There's additional info on the thread where this second letter is shown. The letter has allready been adjusted to adress some of your concerns. Hope you can take a look.

 

https://abdn.pure.elsevier.com/en/persons/christopher-burton

https://www.ncbi.nlm.nih.gov/pubmed/27569909
Morton L, Elliott A, Cleland J, Deary V, Burton C

 

That is a very interesting quotation. It looks to be a summary of the Abnormal Illness Beliefs according to Pilowsky which in 1988 David Wessely and Pelosi considered to be a basis for a new approach for PVFS , but never specifically mentioned again, so far as I can tell. My ,as yet unproven, suspicion is that that was the way that MUS was to take expressly, with PVFS, ME, CFS taking the same route in clandestine fashion.

It would be interesting to know who Burton worked with and was influenced by.

 

No, I do appreciate what an insidious non-diagnosis it is Michiel. My comment wasn't meaning to decry your amazingly impressive efforts, nor diminish the major risks posed by the promotion of MUS as a diagnosis. I'm just a pragmatic person at heart (mix of idealism and realism!), and look for most effective overall solutions. But I'm not presuming my comments to be right, will look in more detail, but probably not tonight.

Will do .

 

That's sort of what I meant: MUS is much more dangerous than a bad or non-diagnosis.

MUS is for example far more dangerous than the DSM-V somatic symptom disorder. While the latter might give rise to many false diagnoses, MUS threatens (if it were taken serious) to annihilate everything about ME/CFS: the clinical knowledge, the research etc.

 

re Chris Burton and the chronic fatigue issue
interesting to find this:

"Introduction (page 9)
‘Syndrome’ removed from chronic fatigue to more accurately reflect the inclusion
criteria"

Multiple Symptoms Study 3:
pragmatic trial of a community
based clinic for patients with
persistent (medically unexplained) physical symptoms

http://www.isrctn.com/editorial/retrieveFile/6b3d6b51-92b3-4825-89a8-9060bf0da471/35773

so is that an admission?

 

more from ABC of MUS



this shows either a lack of knowledge re ME/CFS symptoms (all of them) or he is referring to CFS when he means 'chronic fatigue'.




Oxford criteria (well it would be as he has worked a lot with Sharpe).





first mention of PEM but equates with post exertional fatigue

Deconditioning and GET:




CBT/GET





would this be a COI (a lot of this book would be rendered useless if the guidelines were changed)?

 

Finally from ABC of MUS


'recognised criteria for CFS/ME'

just which criteria is he talking about as it seems to change from one section to another?

Chalder and Wessely and Sharpe for further reading, of course, who else.(don't know the Pemberton one).