ME/CFS Skeptic
Senior Member (Voting Rights)
Not had a chance to dig into this yet, but my initial worries are that:
There are times that it is wise to cut your losses, for risk of provoking much greater losses. Leaving CB unchallenged might just come down to that, unless a very simple and very strong case (not needing very many words!) can be achieved
- A person deeply involved with MUS (=>BPS) is a much more nebulous issue to tackle than someone involved with ME/CFS a la BPS.
- ME/CFS, as @Jonathan Edwards clarifies, is itself a collection of symptoms that at this time are medically unexplained. I fear the waters are going to be muddied by this 2nd letter, at a time they absolutely must not be.
- I worry that a possibly much less convincing 2nd letter re MUS, from the same author as an extremely convincing 1st letter re ME/CFS, might lessen the credibility of the first letter. I would hate for that to happen.
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.