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

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I have now read the article. It is completely skewed in favour of the BPS narrative, including Paul Garner being quoted. It suggests the committee was swayed by 'qualitative evidence provided by a small number of service users'. It claims the GRADE methodology was used wrongly.
 
Trish said:
I have now read the article. It is completely skewed in favour of the BPS narrative, including Paul Garner being quoted. It suggests the committee was swayed by 'qualitative evidence provided by a small number of service users'. It claims the GRADE methodology was used wrongly.
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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.
 
Trish said:
I have now read the article. It is completely skewed in favour of the BPS narrative, including Paul Garner being quoted. It suggests the committee was swayed by 'qualitative evidence provided by a small number of service users'. It claims the GRADE methodology was used wrongly.
Click to expand...

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.
 
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.
 
Ariel said:
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.
Click to expand...


And did the BMJ need to stick a "News" item behind a paywall?
 
Robert 1973 said:
On the other hand, I am disappointed that the committee does not appear to have agreed the new Guideline by unanimous consensus....

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.
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That was never going to happen. They are too far gone.

Cut them loose, and leave them behind in the dust of history, I say.
 
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 ?
 
In 2007 NICE recommended interventions such as cognitive behavioural therapy and graded exercise therapy for people with mild or moderate ME/CFS, whereas the draft update cites a “lack of evidence for the effectiveness of these interventions.” It is unclear, however, how the evidence became unsupportive. The draft update also emphasises the potential harms of exercise, based on qualitative evidence provided by a small number of service users
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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:
“What is serious is that those resigning are some of the most respected service providers for ME/CFS services in the country. This can only mean that the disagreement is fundamental to care of people with ME/CFS, in terms of what works and about the balance between health benefits, side effects, and risks of approaches to help people improve and recover.”
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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. . .
 
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