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

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Andy said:
Proposed British guidelines reject useless chronic fatigue syndrome treatments by Tuller and Lubet

https://www.statnews.com/2020/11/17...-useless-chronic-fatigue-syndrome-treatments/
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My initial reading of this made me wonder what useless treatments Tuller (@dave30th) and Lubet were proposing that got rejected (I was perhaps expecting some satrical piece). But then I realized that the the article about the useless treatments was written by Tuller and Lubet (and the useless treatments were by White, Wessely and Chadler).
 
Adrian said:
My initial reading of this made me wonder what useless treatments Tuller (@dave30th) and Lubet were proposing that got rejected (I was perhaps expecting some satrical piece). But then I realized that the the article about the useless treatments was written by Tuller and Lubet (and the useless treatments were by White, Wessely and Chadler).
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Yes indeed! Needs to segregate the title from the authors.

But the article itself makes it clear enough, which is the main thing.
 
‘CBT Is Not A Treatment Or Cure for ME/CFS’
announced NICE in its’ draft guidance, https://t.co/OWJjzbQGqK?amp=1 on November 10th 2020.
This is likely to come as a shock to Improving Access to Psychological Therapies (IAPT) Service clinicians charged with delivering treatment to patients with Medically Unexplained symptoms, a term which embraces chronic fatigue syndrome (CFS) sufferers, those with musculo- skeletal pain and those with irritable bowel syndrome. Will the IAPT clinicians explain to CFS sufferers that they are not providing treatment, just helping them ‘manage their symptoms’ as NICE now recommends?.

http://www.cbtwatch.com/cbt-is-not-a-treatment-or-cure-for-me-cfs/

 
dave30th said:
yes, very interesting to see how IAPT will deal with this.
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Quite so, and also KCL and other academic organisations.

Assuming the final NICE guidelines reject CBT/GET and regrd ME as a mutli system medical condition, not behavioural then KCL etc will have to undergo a radical paradigm shift in thinking, invalidating their work over the past thirty odd years.

How will they cope with that?

Perhaps that could be a new opening for CBT, with clinics opening up to help the BPS brigade cope with this new reality.

Reminding people what KLC says about ME/CFS:

https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/health/index#fear
 
Sarah94 said:
Will Esther Crawley no longer be allowed to conduct her Lightning Process trials?
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Probably along with a shift to a more generic MUS approach, or more likely FND, by separating the neurological symptoms, since they are not even in the updated definition, a huge oversight. If it's proscribed for ME but not for MUS/FND, which is not a formal concept, then it would probably be approved. Way more likely to be FND, frankly. The whole concept is so nebulous and can apply to anything.

The whole concept of MUS remains problematic, it will still be years of stupid, even if we get spared some of it. Until there's a test, most likely, then the whole thing will crumble to pieces, but until then escalation of commitment demands continuous sacrifices.

And of course, worth mentioning that in missing out entirely on neurological symptoms of ME, this will cause the exact same problems for not only Long Covid, but in being able to deal with the entire pandemic, as acute cases primarily presenting with neurological symptoms will not be recognized. I have yet to see any competent discussion of neurological symptoms in Long Covid, it's either completely dismissed or treated as irrelevant.



 
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From Twitter
Keith Geraghty said:
Our Severe ME/CFS Patient Survey: NICE Guidance Update. Myself & @aneezesmail @UoMNews @PrimaryCareMcr led this work, we presented evidence to the NICE expert panel & our survey is attached to the NICE draft update. Read here: nice.org.uk/guidance/GID-N…

Thank you to all the severe patients that took part, and those that helped, we understand it was a long survey and difficult to complete, but your feedback was really valuable and NICE certainly took your views into consideration. We shall publish academic papers from this soon.
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Code: 
https://twitter.com/keithgeraghty/status/1328983953424994305

 
From the committee news forum:

Dear members,

The forum is working collectively to develop a submission on the NICE ME/CFS Guideline draft. We have separate threads for each section of the guideline where you can post your comments. In these threads, we are maintaining running summaries of members' views. If you have the energy and interest, please read the running summaries and contribute to the discussions. If there are clear differences of opinion on issues, the summaries will just note that.

Here is the key document of the draft guideline:
https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline

Here are the key threads, with others also in the Advocacy Planning (Members Only) subforum:

NICE guideline draft - Section 1.1 Principles of care for people with ME/CFS
NICE guideline draft - Sections 1.2 Suspecting ME/CFS; 1.3 Advice for people with suspected ME/CFS; 1.4 Diagnosis
NICE guideline draft - Section 1.5 Assessment and care planning by a specialist ME/CFS team
NICE guideline draft - Section 1.6 Information and support
NICE guideline draft - Section 1.7 Safeguarding
NICE guideline draft - Section 1.8 Access to Care
NICE guideline draft - Section 1.9 Supporting people with ME/CFS in work, education and training
NICE guideline draft - Section 1.10 Multidisciplinary care
NICE guideline draft - Section 1.11 Managing ME/CFS Part 1 - Energy Mgmt; Physical Mtce; Physical Activity
NICE guideline draft - Section 1.11 Managing ME/CFS Part 2 - Symptom Management
NICE guideline draft - Section 1.11 Managing ME/CFS Part 3 - Psychological support
NICE guideline draft - Section 1.12 Managing coexisting conditions
NICE guideline draft - Section 1.13 Managing flares and relapses
NICE guideline draft - Section 1.14 Review
NICE guideline draft - Section 1.15 Training for health and social care professionals
NICE guideline draft - Recommendations for research

This thread is for general comments about the guideline:
NICE ME/CFS guideline - draft published for consultation - 10th November 2020

We are planning to close the discussion threads on 27 November, and finish up the running summaries soon after. A team will then work with the summaries to prepare a draft submission. The composition of the team that will do that hasn't been finalised yet.

We are aiming to have the draft submission posted on the forum around 12 December. That will give members about 5 days to make any further comment, before the drafting team finalise the submission and submit it by the deadline of 22 December.

Thanks to everyone who has been participating so far; we are happy with the range of opinions and feeling confident that we will be able to make a useful submission.
 
John Mac said:
‘CBT Is Not A Treatment Or Cure for ME/CFS’
announced NICE in its’ draft guidance, https://t.co/OWJjzbQGqK?amp=1 on November 10th 2020.
This is likely to come as a shock to Improving Access to Psychological Therapies (IAPT) Service clinicians charged with delivering treatment to patients with Medically Unexplained symptoms, a term which embraces chronic fatigue syndrome (CFS) sufferers, those with musculo- skeletal pain and those with irritable bowel syndrome. Will the IAPT clinicians explain to CFS sufferers that they are not providing treatment, just helping them ‘manage their symptoms’ as NICE now recommends?.

http://www.cbtwatch.com/cbt-is-not-a-treatment-or-cure-for-me-cfs/
Click to expand...
Professor Jonathan Edwards submission to the NICE guideline Committee are a must read he highlights the importance of support over treatment:

‘much more emphasis is needed on ongoing support, rather than the use of short treatment courses. Perhaps the greatest missed opportunity of trials focussing on stereotyped treatment modalities is a failure to recognise the value of support from experienced carers that simply aims to make life easier to cope with, rather than address a theoretical model’

His is a clarion call for basic humanity, being with people rather than believing that everything is fixable, walking the road with them. This should not be put under a CBT umbrella, to do so is a gross imperialism. Professor Edwards strictures on the research are exemplary:

‘all the studies that claim to show benefit from therapist-delivered treatments in ME/CFS are unblinded trials that make use of subjective outcome measures… ….unblinded trials with subjective outcomes are specifically considered unreliable’
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@Jonathan Edwards
 
So still not prepared to say/accept that it simply doesn't work, that it simply cannot work, for people with ME.

Saying its been withdrawn just due to reported harms leaves the door open for BPS in several respects.

Which may be why its being reported in this way.
 
Request from today. "Do you know how I can find the oxford Brooks research that NICE asked for with regards to children?" Is it shown in the cited reference section and graded in terms of evidence?
 
Science For ME said:
A team will then work with the summaries to prepare a draft submission. The composition of the team that will do that hasn't been finalised yet.
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I have a question that I hate to ask as it might come across unkindly, but...

Does the team putting together the submission need to be made up of entirely British members? If it isn't, is there a risk that NICE might throw it out? I don't know anything about how NICE works but just want to make sure that this has been considered.
 
Sarah94 said:
I have a question that I hate to ask as it might come across unkindly, but...

Does the team putting together the submission need to be made up of entirely British members? If it isn't, is there a risk that NICE might throw it out? I don't know anything about how NICE works but just want to make sure that this has been considered.
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No, it's not an issue. The forum is a registered stakeholder, and the submission will be from the forum.
 
John Mac said:
https://www.pharmaceutical-journal....e-syndrome-in-draft-guidance/20208536.article
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Does anyone have insight into this quote from a Bristol physiotherapist actually praising the new guidance?

Pete Gladwell, a clinical specialist physiotherapist and team leader of the Bristol CFS/ME service at North Bristol NHS Trust, welcomed the proposed change in advice.

“Since the last guideline was published in 2007, a significant body of research has been published which highlight the dysregulation of biological systems in ME/CFS. These changes cannot be explained by deconditioning, so our NHS service has for some time been moving away from a GET approach, which suggests that reversing deconditioning can lead to recovery,” he said.
 
Science For ME said:
Thanks to everyone who has been participating so far; we are happy with the range of opinions and feeling confident that we will be able to make a useful submission.
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dave30th said:
Does anyone have insight into this quote from a Bristol physiotherapist actually praising the new guidance?

Pete Gladwell, a clinical specialist physiotherapist and team leader of the Bristol CFS/ME service at North Bristol NHS Trust, welcomed the proposed change in advice.

“Since the last guideline was published in 2007, a significant body of research has been published which highlight the dysregulation of biological systems in ME/CFS. These changes cannot be explained by deconditioning, so our NHS service has for some time been moving away from a GET approach, which suggests that reversing deconditioning can lead to recovery,” he said.
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This sounds very much the line that is being sold in a united front by psychologists and physiotherapists like those that I met at the NICE committee. It was suggested that my critique of PACE was irrelevant because therapists have moved on from the deconditioning idea, which is no longer the basis for treatment. Treatment now is flexible and person based and based on what therapists know from personal clinical experience works.

I think there is a major concern that the rewrite in the guidelines is exactly this 'what we know works' (and has also been carefully worded to sound OK to the patients). I strongly suspect that a good deal of discussion has gone on in the BACME community to produce this united story.

The real difficulty I see is that what is now written looks pretty reasonable if one assumes that therapists no longer assume that somehow they are treating people rather than supporting them and that they no longer confuse objective with method (i.e. doing more). But there are a few tell tale signs that nothing has changed in the therapist mindset - and I would be very surprised if it had for the majority. Like Lillebeth Larun, they are dedicated to making people better with exercise.
 
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