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

chillier said:
Is it likely that the Royal Colleges continuing to take this position will cause problems with obtaining funding for the kind of research we need? Does their influence stretch to the NIHR and MRC as far as we know? Presumably their opinion won't matter all too much when it comes to the implementation of services and research when it is BACME who are actually running these, and they seem to be pretty cooperative.
Click to expand...
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]
[2] https://www.nihr.ac.uk/researchers/funding-opportunities/
 
rvallee said:
I may have missed it but I hope there's nothing in the guideline about "goals", "agreed" or not.
Click to expand...
There are a couple of mentions of 'goals', including under the section on energy management:
1.11.3 Help people with ME/CFS develop a plan for energy management as part of their care and support plan. Support them to establish realistic expectations and develop goals that are meaningful to them. Discuss and record the following in the plan along with anything else that is important to the person:

  • cognitive activity

  • mobility and other physical activity

  • ability to undertake activities of daily living

  • psychological, emotional and social demands, including family and sexual relationships

  • rest and relaxation (both quality and duration)

  • sleep quality and duration

  • effect of environmental factors, including sensory stimulation.
Click to expand...
And in the section on CBT:
1.12.33 Explain what CBT involves so people know what to expect. Tell them that it:

  • takes a non-judgemental, supportive approach to the person's experience of their symptoms and the challenges these present

  • is a collaborative, structured, time-limited intervention that focuses on the difficulties people are having at that time

  • involves working closely with their therapist to establish strategies to work towards goals and priorities that they have chosen themselves

  • takes into account how symptoms are individual to each person, can fluctuate in severity and may change over time.
Click to expand...
Plus the CBT recommendation separated off in the section on severe and very severe:
1.17.13 Healthcare professionals delivering CBT to people with severe or very severe ME/CFS should adjust the process and pace of CBT to meet the person's needs. This might include shorter, less frequent sessions and longer-term goals.
Click to expand...

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

p.25 lines 4-6:
The words ‘goals’ and ‘expectations’ though qualified with ‘realistic’ create an expectation goals will be set and worked towards. This may cause harm either by assuming the person with ME/CFS should increase activity to achieve a goal or by creating a sense of failure if they cannot. Further, some people may not want or need a management plan. There is no reliable evidence for 'benefits in setting of goals'. In Evidence Review G (p.336, lines 23-35), it is acknowledged that rigid or unrealistic goals can lead to deterioration and feelings of pressure and blame. A goal that is unrealistic or rigid to a person with ME/CFS may seem achievable to a HCP, leading to conflict and feelings of pressure and blame.

Suggested replacement wording:
'If the person with ME/CFS would like an energy management plan, discuss and record the person's:'
Click to expand...

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/
 
Sarah said:
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/
Click to expand...
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.
 
Andy said:
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.
Click to expand...

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

*eta: from Yozza in early 80s TV programme " Boys from the Black Stuff".
 
Last edited:
Dx Revision Watch said:
That's interesting. Since this afternoon (when I last looked at his account), I've been Blocked on Twitter by Prof Sharpe.
Click to expand...

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.
 
Last edited by a moderator:
Reginald VelJohnson said:
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.

A truly bizarre figure.
Click to expand...


Yes, I noticed his "Supports free speech." Ah, well. His loss.
 
I'd still quite like to see the evidence for
Most people with ME/CFS will improve over time, especially with treatment, although some people do not make a full recovery.
Click to expand...
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.
 
Last edited:
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.
 
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)
 
You must log in or register to reply here.
Back
Top Bottom