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

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Hutan said:
The logical thing for BPS people to do at this point would be to very quietly put up the surrender flag on GET for ME/CFS, if necessary sacrificing those who staked their reputations on PACE and who refuse to go quietly. And then, carry on exploiting the desperation of the people with MUS and Long Covid labels by applying rebranded mind and exercise therapies. Indeed for those BPS people who can bend like the reed rather than stand against the storm like an oak, there will probably still be easy ways to keep being paid to provide 'CBT and GET-like' services to people with ME/CFS for a long time to come.
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They can't. This isn't about ME, or even about us. None of those people accept that there is such a thing as ME/CFS. There is only chronic fatigue, the most common symptom in all of medicine. Add to that chronic pain and you basically cover all chronic illness. The ME-BPS model is the foundation for the whole MUS/BPS/FND project of psychologizing what amounts to 1/3 of all medical cases. Incorrectly, of course, but they are not trying to carve a niche, they are trying to go mainstream, to legitimize the old pre-science model of magical medicine, where the healing words of (read in heavy Russian accent) stronk doktors is a power in itself.

If the ME-BPS project falls everything will be splashed with the stink of failure, as most of the rest of the evidence depends on the belief that fatigue can be improved by a combination of therapy and exercise. The entire basis of IAPT for chronic illness is built on the trifecta of PACE, ACTIB and CODES. The entire project rests on the illusion that this is legitimate, the rest is irrelevant. Symptoms are irrelevant. Nothing that happens to us is relevant, they are simply in the business of managing a huge mass of complaints. Nothing else.
 
SNT Gatchaman said:
Just a small comment as an aside and for the benefit of other members here who have been spoilt over time by this forum's capable infrastructure :thumbup:.

For any online form submission >3 lines, it's often a good idea to compose in a separate text editor and then copy/paste to the web form. Saves much irritation if the connection is lost.
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Also a tip from a programmer but copy your text often in the clipboard (ctrl-c). You can inadvertently overwrite it but more often than not if you make a mistake you'll likely still have it in your clipboard.

Select all text and copy. Repeat often as you write the text. It's basically the equivalent of ctrl-s all the time, another reflex that saves a lot of worry.
 
Peter Trewhitt said:
There is a potential concern in that Dr Shepherd in the MEA’s account of his being ‘stood down’ (see https://meassociation.org.uk/2021/0...V7JoEubq4F7dJBMWvL4kcE4qRIYaDRsfiPk-le63aXaiU ) finishes with:



Though I agree, given the three resignations, it is unlikely this involves any significant change of tack re GET or CBT.
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Also, reading the tone of the whole statement, it doesn't sound like he's ultra concerned, compared with the bmj thing it's very relaxed.
 
If the draft guidelines stick, there will be a misinformation campaign to convince the public that CBT/GET rehab is valid and was withdrawn for reasons other than valid ones.

There are business and career interests behind CBT/GET and they'll want to keep giving CBT/GET to patients, if not ME/CFS patients then other ones. I also predict that they might begin to push alternative diagnoses that can be applied to ME/CFS patients but still allow CBT/GET.
 
Andy said:
I've not received anything yet, and unless they are working overtime I assume I won't see anything until tomorrow now.
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Just received this and I swear the form was sent with the 2020 draft response!

Dear B

Rupert has passed your email on to me. The embargoed release was sent out today to stakeholders that returned the confidentiality agreement following consultation. I have checked our records and we do not have a form from LocalME.

I have attached this as a Word document. Please could you fill in the details on page 1 and 3 and send this back to me? I will then be able to send you the link to access the embargoed release of the guideline.

Many thanks,
Katie

Katie Stafford
Senior Guideline Coordinator | Centre for Guidelines
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester | M1 4BT
Web: www.nice.org.uk
 

Attachments

Ariel said:
Yes, I was also concerned about Dr Shepherd's reference to "changes" in the draft - although I doubt it is anything major, I was concerned about weakening of the language that would constitute loopholes. There is already far too much reference to physical activity in the draft and I can see how concerning language could be inserted into those sections to give room to operate.
I found it more likely that there would be some weakening of the position on CBT, as there is some confusion about what CBT for ME/CFS consists in and it's still supposed to be okay to offer it in some form as a "supportive" therapy. I expect people will have tried to take advantage of any confusion about CBT and GET (calling it "pacing", "individualised", etc). I hope it remains clear that CBT is not a treatment for ME/CFS; this point is often lost.

I don't know if it's too much to hope that the draft will be strengthened and clarified, not weakened to give the kinds of people who are resigning in protest space to operate.
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I assume that the most contentious point is probably the recognition of harm that has been done to us. Technically this directly blames the BPS ideologues, as they are fully responsible for this harm. No surprise they don't like that. But it's true, so it should remain. But obviously they are extremely worried about the repercussions of a recognition of what they've done. Harm is only harm when it's acknowledged. This acknowledges it, although mutely, and the implications probably set the stage for them being thoroughly discredited and the legal clusterfuck that will be the end of their career.
 
Ariel said:
Needs to be a change in leadership at BMJ at many levels of the organization. I hope more and more people come to this view.
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I think the change in leadership has already been organised. Fiona Godlee is stepping down. She made a remark about the BMJ moving into some exciting new phase. As to what that will bring who knows but it doesn't sound too promising to me.
 
Peter Trewhitt said:
Though I agree, given the three resignations, it is unlikely this involves any significant change of tack re GET or CBT.
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Pure speculation but my understanding is that Jo Daniels was penalised in some way for tweeting about CBT a while back. I wonder if the problem is that this has meant that the sensible reformers have had more scope to tidy up some further loose ends in the guidelines and that this has proved more than the three who resigned could bear. Charles Shepherd may have been sacked as a desperate move to seem to play fair (although he did not vote anyway) and staunch the haemorrhage of members.
 
There is now another article, this time in the Times, on the three resignations:

‘Experts quit over call to drop exercise as treatment for ME’
https://www.thetimes.co.uk/article/...u_ncWQ15uLHWOt1BiMAQ0sJr8Rzjc01IDj77TJzaL6iBU

I don’t have access to the full article because of the pay wall, but it starts:

Bitter divisions in the medical profession over the debilitating condition myalgic encephalomyelitis (ME) have been laid bare by a spate of departures from the body reviewing its future treatment.

Four members of the National Institute for Health and Care Excellence (Nice) committee producing the treatment guidelines left just two weeks before publication of the document. Nice is expected to conclude that the NHS should no longer recommend a controversial exercise therapy for ME after patients said that exertion made their illness worse.

The conclusions have potential implications for the treatment of long Covid, which has similar symptoms to those associated with ME. Sufferers complain that they too are being told to follow exercise programmes that cause relapses.

The charity Action for ME said that its … … …
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Again it is suggesting a reason for these resignations, which must either be pure speculation or represent a breach of the individuals’ confidentiality agreements with NICE.

[added - if anyone has access to the full article it would be interesting to know if it is more balanced than the ghastly BMJ article or not. Were the three resignations aimed at generating maximum prepublication publicity, when anyone one involved in the process is unable to respond because of confidentiality agreements and/or the two week embargo?

Are individual members of S4ME now able to comment on these articles or even comment here on our site until the publication day, now the prepublication drafts are being sent out to stakeholders, even if we are not involved in looking at that draft? Admin do delete any of my recent comments if they now represents a breach of the forum’s confidentially agreement with NICE. ]
 
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Peter Trewhitt said:
Are individual members of S4ME now able to comment on these articles or even comment here on our site until the publication day, now the prepublication drafts are being sent out to stakeholders, even if we are not involved in looking at that draft?
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The MEA are still sharing on Facebook links to these articles and allowing reader/member comments. Though Dr Shepherd is being very circumspect about what he himself says, he is not above encouraging readers/members to comment themselves on such as the BMJ article.
 
Peter Trewhitt said:
Are individual members of S4ME now able to comment on these articles or even comment here on our site until the publication day, now the prepublication drafts are being sent out to stakeholders, even if we are not involved in looking at that draft?
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As long as you are not one of our team who will have sight of the guideline before publication day then I don't see why you, or anybody else, should not be allowed to comment as you see fit. Should you chose to do so, and to be on the safe side, it's probably best not to mention your membership of the forum though to save potential complications.
 
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