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

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.

 

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.

 

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guidelines stick, there will be a misinformation campaign to convince the public that CBT/GET rehab is valid and was withdrawn for reasons other than valid ones.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.

 

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

 

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.

 

In case there was any doubt where BMJ stands by this horrible piece of "journalism".

Head of Journalism at BMJ:

https://twitter.com/user/status/1422580346579824655

 

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.

 

And no attention to accuracy, even when quoting a headline from her own organisation. Only three of the four actually resigned.

 

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.

 

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:

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. ]

 

Have attached a pdf "print out" of the Times article

 

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.

 

Yes, Far more balanced, as you would expect from Sean O’Neil. I’m sharing a tweet with screenshots of the article in the hope that this avoids breaking forum rules…
https://twitter.com/user/status/1423017830484627456

 

Thank you @Robert 1973, yes a much better piece of journalism. Though still suggestive that there are ‘sources’ breaching confidentiality.

 

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.

 

Thank you @Andy

 

thanks Caroline - Just skimmed the Times article and it reads fairly well --- nothing immediately jumped out at me.

 

Looks like she has blocked me!