NICE ME/CFS guideline - draft published for consultation - 10th November 2020

I'd like to see the full article, if that's possible.

 

Michael Beadsworth, consultant in infectious diseases in Liverpool is very much BPS
"Don't be afraid of exercise" is what he said to me.

ETA: Dr Alistair Miller was his boss at the hospital at one time.

 

I suspect he's a close colleague of Garner, as both work in infectious diseases at Liverpool.

 

Nice, that dampens my worry significantly.

 

I am really angry that the BMJ has consistently taken this line, and so aggressively.

Regardless of outcome, this kind of thing just (intentionally) sows confusion and makes it more difficult for patients and healthcare providers alike. Irresponsible, unethical, petulant behaviour.

 

Perhaps we will be hearing a lot more from them in the upcoming weeks, in that case?

 

It seems the article was written by a freelance journalist often used by BMJ. If an article is going to be so heavily politically loaded you would have thought it better written by the editor. This is presumably a way of keeping the head below the parapet.

 

She couldn't even get the disease name acronym right.

 

This feels like good and bad news. On the one hand I assume they wouldn’t be resigning if the Guideline was endorsing CBT and/or GET as safe and effective treatments. So I assume this means the Guideline will remain similar to the draft in warning that GET is neither safe nor effective for ME/CFS and that CBT should not be prescribed as a treatment or cure.

On the other hand, I am disappointed that the committee does not appear to have agreed the new Guideline by unanimous consensus. Perhaps not surprising that people who have spend their careers promoting therapies are reluctant to put their names to a document which says they don’t work and are not safe. But still, it would have been helpful if the BPS enthusiasts on the committee had had the humility and courage to accept that they had got things wrong in the past.

 

The BMJ has a long history of bias in its coverage of ME/CFS. There was even a paper published on it: "Chronic Fatigue Syndrome:
Editorial Bias in the British Medical Journal"
https://web.archive.org/web/20170809015410/http://www.axfordsabode.org.uk/me/JCFS.pdf

https://twitter.com/user/status/1422553639437094914

 

And did the BMJ need to stick a "News" item behind a paywall?

 

I had a look at the BMJ news piece published today.

It is probably best for me not to write a rapid response although I am not actually aware of agreeing to any confidentiality when I agreed to be an expert witness.

The author of the news piece notes:
It is unclear, however, how the evidence became unsupportive.

Well it is quite clear from my report in the draft appendix. It did not become unsupportive, it always was. It is also quite clear from my response to Lynne Turner-Stokes, which was not cited despite Lynne's piece being cited together with Busse's disagreement (the author does not mention that L T-S thinks like me that GRADE is junk).

It might be good to have some responses. I think the key point is that the evidence has not changed. It is just that it has been reviewed by people who do not have a competing interest in the therapies involved and found to be valueless. My witness statement could of course be cited!

Garner's comment about the resigners being respected clinicians in the field sounds a bit like a comment from the Honourable Member for the Seventeenth Century. And full of irony for those with open eyes.


@dave30th ?

 

This is an utterly egregious misrepresentation. The evidence was never supportive; a cogent assessment of that evidence showed that its quality was sufficiently low to be unworthy of inclusion in treatment recommendations.

I see the author uncritically regurgitates Busse's line. We really need to see some academic work tackling the mechanistic nonsense of the GRADE tool head-on and open a debate about its use in guiding NICE & other evidence reviews.

And Garner's comment, too:

Does any patient believe that a PACE author (Murphy) and a physiotherapist from Crawley's clinic are the most respected service providers? The disconnect between this inward-looking clique and the everyday experiences of ME patients is quite astonishing. They really are living in their own little bubble, entirely impervious to objective reality. If these three have resigned, things are looking up.

I seem to remember that the 2007 guidelines were marred by the resignation of the patient representatives. Sauce for the goose. . .

 

Yes, I like that.