UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Some previous comments made here: https://www.s4me.info/threads/how-c...-low-quality-studies.22862/page-2#post-383652

Professional jealousies have been known to involve attempting to block an 'enemies' grant applications across academia. It's a two edged sword that simply promotes tit for tat behaviour [1] and the
transparency involved in most processes these days sees it happening far less than it once might. The MRC I would think is wholly safe, while NIHR doesn't fund novel biophysical research, its remit is really about making the NHS work better [2] and so is less significant for our major concerns, but likely remains a challenge refocussing research away from the BPS cohort perspective..

[1]

https://www.youtube.com/watch?v=aEQcsuXnnnc

[2] https://www.nihr.ac.uk/researchers/funding-opportunities/

 

There are a couple of mentions of 'goals', including under the section on energy management:

And in the section on CBT:

Plus the CBT recommendation separated off in the section on severe and very severe:

The following was one of the S4ME stakeholder comments on the draft guideline re goals:

As @Trish mentioned earlier, there are threads on each section of the guideline which detail the changes from the draft, corrections to the guideline, and final amendments made after the roundtable, and which provide a commentary on the final recommendations. The commentary goes into a bit of detail on the positives and negatives of the recommendations, wording etc. These are in the members only section here:
https://www.s4me.info/forums/2020-uk-nice-me-cfs-guideline-members-only.182/
They're also listed in the first post of this thread:
https://www.s4me.info/threads/uk-ni...th-october-post-publication-discussion.22996/

 

The problem is, the NHS is run on targets (i.e., goals). So it was very hard not to include them, even though many of us didn't want the word anywhere near the GL.

Maybe if the NHS wasn't used as a political football... But I'll stop there before I break any rules.

 

It's quite a thing to be forced into a situation where you admit to lying to patients for a decade or so about what treatment they are receiving and, presumably, thinking that you are making a principled stand.

 

Ah, but it's good enough for Esther.

 

That's interesting. Since this afternoon (when I last looked at his account), I've been Blocked on Twitter by Prof Sharpe.

 

Eddie Mair discussing the new ME/CFS guideline on LBC with Dr Paul Chrisp, director of the Centre for Guidelines at NICE. Also includes discussion with a number of patients with the exception of the GET coach who unfortunately didn't make the cut.

https://www.youtube.com/watch?v=Cq8hm3WvdW0

 

To me that joint statement sounds like " Gizza job".*

*eta: from Yozza in early 80s TV programme " Boys from the Black Stuff".

 

Particularly paradoxical considering Sharpe is now billing himself as a free speech crusader (see Twitter bio). Perhaps that mantra doesn’t extend to any speech critical of PACE, BPS, or anything else he fancies. Much like his apparent commitment to evidenced based medicine.

 

if rcp aren't prepared to defend GET as trialed, then this is just 'our unevidenced treatment programme is fine, take our word for it'. one wonders why they bothered

 

Yup, gizza job, forget all that training stuff.

 

Yes, I noticed his "Supports free speech." Ah, well. His loss.

 

Has anyone had sight of the full BMJ report?

 

I'd still quite like to see the evidence for

as as far as I am aware no such evidence can possibly exist, given they have not actually researched it.

ETA thing is, they can't just use the same unfounded, unevidenced assertions when changing from the page being for CF, that they think is just fatigue, where it might be possible that a lot of people do recover, to ME.

These sort of things will happen when a condition is hijacked and redefined, and then they're told to change it back after 30 years.

 

Tried to do a paragraph-by-paragraph hot take on the joint statement here.

https://twitter.com/user/status/1454144986677747718

 

Nursing Times

“This severe, complex multisystem disease has long been misjudged by the healthcare profession"

Caroline Kingdon

https://www.nursingtimes.net/news/p...y-published-following-controversy-29-10-2021/

 

Things I have learned today:

"Medical leader" is apparently a thing.

How far the some of the royal colleges have gone to the dogs.

How little neurologists have to offer, and how nasty they are about it.

I also think there might finally be something useful for lawyers to get their teeth into now, rather than the legal posturing we've seen so far.

 

have any patient groups fronted up for this or have they just made this up?

 

I'd like to put a fiver on them having just made it up please.

 

it really is extraordinary for the rcp to throw GET under the bus, while moaning about the way that the "date and evidence has been assessed", and then asking for a new and unevidenced treatment protocol, presumably assembled on the fly in fatigue clinics, to be given precedence, when the primary difference between it and what NICE are offering is that Drs get to overrule patients in telling them whether they're well enough to do something or not. One has to admire to incoherence and blind panic that has gone into that statement.

(edited for coherence, ironically)