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

Arvo said:
Page 28 of the PACE trial CBT manual for therapists.

I thought it might be of interest for people responding to the RC nonsense. (If I'm posting in the wrong thread, then I'm sorry mods!)

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these people are so convinced they are such geniuses on ‘CFS/ME’they think they can say whatever they like about their ‘model’ and it will be believed despite evidence of what they always used to say being available
 
Dx Revision Watch said:
On 29 October, ie the day after publication, I finally received a response to my 28 days overdue request:

1. The date on which Quality assurance for guideline: Myalgic
encephalomyelitis (or encephalopathy)/chronic fatigue syndrome:
diagnosis and management In development [GID-NG10091] was signed off.

Response: The guideline was signed off on 08 July 2021.

2. The date on which the NICE Pathway (everything NICE says on a topic in
an interactive flowchart) and any supporting resources were signed off
for quality assurance.

Response: Information not held. A NICE Pathway is an alternative
representation of other NICE guidance, the content is the same. The
content was signed off under 1 and 3.

3. The date on which NICE's Guidance Executive signed off guideline
GID-NG10091.

Response: NICE’s guidance executive approved the guideline for embargoed
release on 30 July 2021.

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I had already received the information under FOI that the three committee members had resigned on 26 July.

As Quality assurance was signed off on 8 July, then the Guideline Committee must have signed off before 8 July, well before the 26 July resignations.

And as Trish has said, the Minutes of the Roundtable state that the committee members signed off on the guideline before resigning (on 26 July).
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Hey wait, that is a little bit different then in the pauze puzzle thread I think?

There I have

8/7 quality assurance sign off.
26/7 resignations
30/7 sign off guideline by Guideline Executive

Which is about the same, but looking at NICE's answers it seems like the 8/7 was the actual sign off and 30/7 the approval for embargoed release?
 
Arvo said:
Hey wait, that is a little bit different then in the pauze puzzle thread I think?

There I have

8/7 quality assurance sign off.
26/7 resignations
30/7 sign off guideline by Guideline Executive

Which is about the same, but looking at NICE's answers it seems like the 8/7 was the actual sign off and 30/7 the approval for embargoed release?
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Yes, 30 July sign of by Guidance Executive.

Sign off by Guideline Committee happens before sign off by Quality Assurance (8 July) and sign off by Guidance Executive (30 July).

So the order is:

Committee sign off (no date available).
Quality Assurance sign off.
3 committee members resign.
Guidance Executive sign off.

The Q and the A given to the Q was:

The date on which NICE's Guidance Executive signed off guideline GID-NG10091.

Response: NICE’s guidance executive approved the guideline for embargoed release on 30 July 2021.

According to the Manual, Quality assurance process and Guidance Executive sign off are two processes.
 
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https://www.nice.org.uk/process/pmg20/chapter/finalising-and-publishing-the-guideline

11.1 Quality assurance of the guideline
After changes agreed by the committee have been made to the guideline in response to consultation comments from registered stakeholders, the guideline is reviewed by NICE staff with responsibility for guideline quality assurance. They check that the changes made to the guideline are appropriate and that the developer has responded appropriately to the registered stakeholders' comments. Further changes to the guideline may be needed; the developer continues to maintain an audit trail of all the changes. The NICE Pathway (everything NICE says on a topic in an interactive flowchart) and any supporting resources are amended in line with any changes to the guideline. These also undergo quality assurance and are signed off within NICE.

Equality impact assessment
Before the guideline is signed off for publication, the equality impact assessment is updated by the developer and the committee chair to show whether any additional equality issues have been identified during consultation, and how these have been addressed. The equality impact assessment is published on the NICE website with the final guideline.

11.2 Signing off the guideline
NICE's Guidance Executive considers and approves guidelines for publication on behalf of the NICE Board. The Guidance Executive is made up of NICE executive directors, centre directors and the communications director.

When considering a guideline for publication, the Guidance Executive reviews a report from NICE staff with responsibility for guideline quality assurance. The report details whether the guideline:

  • addresses all the issues identified in the scope

  • is consistent with the evidence quoted

  • was developed using the agreed process and methods

  • was developed with due regard to the need to eliminate discrimination, advance equality and foster good relations

  • will lead to a resource impact when implemented.
If any major issue is identified by the Guidance Executive it may be necessary for the committee to meet again to address the problem.

The Guidance Executive does not usually comment at other stages during the development of the guideline.
 
Trish said:
Further overnight thoughts about the Royal Colleges' awful statement and BMJ publishing it and any replies.

I think this RC's statement and some of the same organisations' submissions to the draft consultation have revealed something rotten at the heart of British medicine, and that something is -

- a belief that exercise and positive thinking (CBT) are always helpful to health and never cause harm

- a complete lack of grasp of what post exertional malaise is and the effects of triggering it on long term health

- a belief that their clinical experience trumps clinical trial evidence

- a belief that they know which treatment is best for which patient and the have expertise that enables them to 'personalise' their advice to patients

- disdain for people with unexplained symptoms, including those with ME/CFS

- a belief that medically unexplained equals psychosomatic

- a lack of understanding that patients saying a polite thank you and going away doesn't equate to the treatment working

- a lack of curiosity about the long term effectiveness of and of harms of what their clinics do. So no follow up of patients or recording of harms.

What that all adds up to is lack of understanding of the need for sound evidence. There is far too much misplaced confidence in 'doctor knows best', and what the doctor 'knows' in this case is based largely on current fads about exercise and positive thinking.
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I'd add:
- a belief that you can tell when the individual person in front of you is improving or deteriorating due to therapy versus when they're improving or deteriorating due to spontaneous change/other factors.
 
ukxmrv said:
I was thinking of what we need to concentrate on now post publication. Not sure if we have one or need a new thread?

This was my list but sure to be more. Not in order of priority

1. Stop the clinics being able to carry out poor quality or dangerous CBT and GET research
2. Stop the clinics carrying out bogus surveys
3. Commission new better services
4. Audit current services to see if compliant to the new guideline
5. Join Commissioning groups and Patient groups to try and influence
6. Check when the new NICE guideline will be updated (10 years?)
7. Cochrane - keep plugging
8. Commission proper research
9. NHS webpage - update to current guideline
10. Educate GPs on the new Guideline
11. Educate current patients and new patients to make them aware of new guidelines
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1. istr there are lots of pieces of evidence that GET harm was denied explicitly. i distinctly recall a youtube clip years ago of a training session with, probably, c***re g*r**a explicitly saying, flat out, that there is no harm from the treatment. anybody recall this?

2. media reports are surprisingly bad compared to recent better coverage, with none getting it right. either the propagandists have improved their work by getting unsourced falsehoods in there or the media are just bad.

some media reports look computer-generated. it is strange. maybe new propagandists were hired? the usual smc stuff is not the same any longer.

so we have to fix e.g. tiredness. fatigue and tiredness and imo the activity domain stuff need to be fought. even with confusing mentions of pem, the disease is characterized as "some activity thing".

the message is: problem solved no need for biomedicine we have experts [who should be consulted]. why is a professional needed for activity management in media accounts in preference to the mention of the very existence of the many symptoms of the disease? just because it mysteriously [not] occupies the guideline doesn't mean the media have no responsibility to talk about the basic facts of the disease.

the very idea of [1] what the disease is, and [2] the seriousness of it is completely lost on most or all media accounts. that is a feat. why no mention of coi? why were charities rarely consulted?

oh screw it please please ed yong miriam tucker monbiot whoever write about this including meta. and mention the chronic pain and lc guidelines. we must help those.

also why so many media mentions of non-directive or unlabeled cbt? mention of the negative [directive bad] should be enough. the positive [good for whatever it is good for] is taking column inches from listing many effects and needs of the disease.


one fix: the guideline says it is multi-system. articles must say what that means [e.g. meicc lists features of the disease and classes of features also [neuro, immune, etc. we could also supply a picture of severe which would also help nix the tiredness claim.]
 
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I thought the people who worked to make the 2021 guideline happen and those worked to make it good might like to know:

A link to the 2021 NICE ME/CFS Guideline will be added to the Resources sections in the online guidance documents about ME/CFS that we have for medical professionals (doctors, allied health professionals) in my regional health authority in New Zealand. The benefits of the good outcome go beyond the territory covered by NICE.

I also shared @Michiel Tack's very nice summary of related issues; @dave30th's blog and @Brian Hughes' blog about LP with my contacts in the regional health authority. Of course, some medical people do understand that there is a long way to go in making medicine more evidence-based, but, like us, are working towards it.
 
Samuel said:
1. istr there are lots of pieces of evidence that GET harm was denied explicitly. i distinctly recall a youtube clip years ago of a training session with, probably, c***re g*r**a explicitly saying, flat out, that there is no harm from the treatment. anybody recall this?...
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If that's the one where another clinician is playing the part of a patient, the links for these presentations are on a thread in another place.
 
dave30th said:
that page is gone. did anyone archive it?
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Here you go: https://web.archive.org/web/2019041...oppn/depts/pm/research/cfs/patients/self-help

@Sean - was it still online when you posted it? Would be interesting if it was being changed due to NICE.

Looks like it was - google had these pages online on the 29th: https://webcache.googleusercontent....+&cd=1&hl=en&ct=clnk&gl=uk&client=firefox-b-d

A very meta archive of the google cache, in case that's of value: https://web.archive.org/web/2021110...+&cd=1&hl=en&ct=clnk&gl=uk&client=firefox-b-d

Looks like this is their new page: https://www.kcl.ac.uk/research/persistent-physical-symptoms-research-and-treatment-unit-1

I always liked this bit from their old pages, as a possible explanation for patient surveys showing disatisfaction with CBT:

The problem may well be that some of our treatments are too evidence based
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https://web.archive.org/web/2019041...c.uk/ioppn/depts/pm/research/cfs/health/index
 
Not sure I remember their old CBT page [edit: David noticed that actually this is still up - it's in a different section of the KCL website]:

Our researchers were involved in the landmark PACE trial, which showed that CBT and GET for CFS were more effective and more cost-effective than adaptive pacing therapy – where people balance rest with activity – or specialist medical treatment. One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.
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https://web.archive.org/web/2019040...ifference/22-CBT-for-chronic-fatigue-syndrome
 
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Sly Saint said:
didn't seem to be a problem for EC at her Tedx talk.

talking of which. re GET; from MAGENTA feasability protocol review:

"Please justify the use of 10-20% progression for use with children/adolescents with CFS."
"Lines 4 and 29-30: A progression of 10-20% per week in physical activity is regarded as standard for healthy adults. Other CFS research suggests that progression for CFS patients should be a lot less or at least self-paced with periods of no progression if symptomatic. Can the authors explain why the 10-20% progression was chosen and support this with references from CFS literature?"

response
"Thank you. We have clarified that this is following UK guidance. A progression of up to 20% is the guidance provided by the National Institute of Clinical Excellence1 and is standard practice in the UK. This is also consistent with the PACE trial, the largest trial done to date. We have now included a reference to NICE guidelines and the PACE trial, the protocol now reads: “The intervention will encourage children and adolescents to find a baseline level of exercise which will be increased slowly (by 10-20% a week, as per NICE guidance1 and the PACE trial2)”.
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Did you have a link for them? I couldn't see them on the BMJ page but I remember just being blind to them previously.
 
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