NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

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Stakeholder submissions and NICE responses

This thread is for discussion of the published tables of stakeholders submissions to the NICE ME/CFS guideline draft, which also include responses from NICE.

The submissions were made by stakeholders in December 2020.

These tables with both the stakeholder comments and NICE's response were published at the same time as publication of the NICE guideline, on 29th October 2021.

https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-5

https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-4

Some posts have been from this thread:
UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion
 
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I've just started reading some of the stakeholder feedback comments on the draft guideline. Shocking! I think the Mods may need to set up individual threads for some of the main stakeholder comments, for example a thread just for the Association of British Neurologists. I'm still reading their comments (as they are at the top of the list) and given that ME is accepted as a neurological condition their comments need to be unpicked on the forum (at some point in the future) and not lost in a general thread discussion. I am sure there are going to be other stakeholders whose comments we would want to examine in detail too, given that they are saying they didn't consider the draft guideline 'fit for purpose' and that NICE should redo it with a new committee (but I am still on page 2).

The ABN does not regard this guideline as fit for purpose or meeting the usual high standards of NICE. This response is not a request for minor changes. There are so many flaws with this document, that we would request an independent review of the process by a new committee. We suggest that there should be scrutiny by NICE of the way that the committee have gone about their task and an investigation of systematic bias and impartiality in the preparation of the guidelines.
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https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses
 
Simbindi said:
I've just started reading some of the stakeholder feedback comments on the draft guideline. Shocking! I think the Mods may need to set up individual threads for some of the main stakeholder comments, for example a thread just for the Association of British Neurologists. I'm still reading their comments (as they are at the top of the list) and given that ME is accepted as a neurological condition their comments need to be unpicked on the forum (at some point in the future) and not lost in a general thread discussion. I am sure there are going to be other stakeholders whose comments we would want to examine in detail too, given that they are saying they didn't consider the draft guideline 'fit for purpose' and that NICE should redo it with a new committee (but I am still on page 2).



https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses
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Association of British neurologists (my bolding):

“We are concerned by the recommendation to risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks to the person. We are not aware of any clinical evidence to support this recommendation. The view of the ABN is that this recommendation is neither necessary nor practical to implement. We can think of no other situation in medical practice where every interaction with a patient would be “risk assessed” in any formal way (although doctors always consider the impact of their interactions on patients as part of standard good medical practice, as defined by GMC guidance). We are concerned that the requirement to undertake a risk assessment could become a barrier to patients accessing care. We believe that standard good medical practice, and patients’ existing right to decline any interaction with a health professional are sufficient to mitigate any potential risk.”

This makes me so angry and sad. They have so little idea of what severe and very severe ME is. More than that, they don’t want to care.

I was happy however to see the NICE committee’s response:

“The committee agree this is good clinical practice and should happen routinely. This recommendation has been included based on Appendix 2 and the committee’s experience that health and social care professionals can underestimate the impact of interactions on people with severe or very severe ME/CFS.”
 
I think maybe NICE reading the stakeholder comments on the draft from organisations such as the ABN will have opened their eyes to the extreme prejudice PWME have faced, and just how much the condition has been misunderstood, maligned and neglected as well as patients being wrongly accused of being 'anti-psychiatry' and 'prejudiced against mental health sufferers'. I am starting to see why NICE took the exceptional decision to pause the publication and set up the 'round table' approach to deal with those stakeholders who wouldn't accept NICE's reasonable responses to them (as per the stakeholder feedback document).
 
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Simbindi said:
I've just started reading some of the stakeholder feedback comments on the draft guideline. Shocking! I think the Mods may need to set up individual threads for some of the main stakeholder comments, for example a thread just for the Association of British Neurologists. I'm still reading their comments (as they are at the top of the list) and given that ME is accepted as a neurological condition their comments need to be unpicked on the forum (at some point in the future) and not lost in a general thread discussion. I am sure there are going to be other stakeholders whose comments we would want to examine in detail too, given that they are saying they didn't consider the draft guideline 'fit for purpose' and that NICE should redo it with a new committee (but I am still on page 2).

https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses
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I am deliberately not reading any detail now in the middle of the night so as not to get too drawn in and rule out any chance of sleep, but I agree we need to look at this stakeholder feedback in detail, and consider how we can use this information to illustrate how little people, who ought to understand better, know about the reality of life with ME.
 
I wish I could see/read better, without it being more draining than it's probably worth - but it seems clear from the first few pages of the comments table that the association of british neurologists sees ME as nothing more than chronic fatigue (they appear to say as much in a few places, especially when objecting to diagnostic criteria, other than 'fatigue', as 'unnecessary').

It also appears clear that they do not even understand the meaning of chronic fatigue, seeming to think of it as 'fatigue' only.

Maybe Saturday - new specs on Saturday.
 
Wonko said:
I wish I could see/read better, without it being more draining than it's probably worth - but it seems clear from the first few pages of the comments table that the association of british neurologists sees ME as nothing more than chronic fatigue (they appear to say as much in a few places, especially when objecting to diagnostic criteria, other than 'fatigue', as 'unnecessary').

It also appears clear that they do not even understand the meaning of chronic fatigue, seeming to think of it as 'fatigue' only.

Maybe Saturday - new specs on Saturday.
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I think their statement that they see ME as a' disorder of the nervous system' is made in the context of Functional Neurological Disorder also being seen as this. It is in no way made as supporting the MEA 'purple book' in this regard.
 
Simbindi said:
I think their statement that they see ME as a' disorder of the nervous system' is made in the context of Functional Neurological Disorder also being seen as this. It is in no way made as supporting the MEA 'purple book' in this regard.
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Illuminating from @Simbindi ' s comments - ( notvread yet - just up for early morning getting of heat packs) neurology I believe were one of the disciplines on previous guideline consultation who could not see the sense of GET. Shows the power of propaganda since early 2000s.

ETA The Scottish Neurological Survey is still open .
I' ve highlighted on MEAction Scotlsnd's Facebook thread that folks should perhaps read the comments before taking part..
 
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Trying to navigate around the documents I have been looking for the stakeholder feedback on the 4 August Guideline. That was surely still part of the procedure even if the legitimate issues which could be raised were supposedly limited. I cannot see that anywhere.Am I just missing it?

This feedback could have informed any alterations made to the 4 August draftand should be available.

EDIT and shouldn't the 4 August document also be included as part of the formal evidence base? In the interests of transparency.
 
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chrisb said:
Trying to navigate around the documents I have been looking for the stakeholder feedback on the 4 August Guideline. That was suerely still part of the procedure even if the legitimate issues which could be raised were supposedly limited. I cannot see that anywhere.Am I just missing it?

This feedback could have informed any alterations made to the 4 August draftand should be available.
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If not included in the Guidelines package, hopefully some of this will come out as a result of the FOI requests submitted, but still outstanding.
 
Simbindi said:
I can see the need for a book to be written about this whole process and what it has exposed. There's way too much there for just a series of articles.
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There are whole careers and professorships in history and ethics to be had on investigating and telling the real story of this shabby brutal saga. Not joking.
Peter Trewhitt said:
...we need to look at this stakeholder feedback in detail, and consider how we can use this information to illustrate how little people, who ought to understand better, know about the reality of life with ME.
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Use their own words back against them. Only seems fair.
 
Brian Hughes said:
Unbelievable. But then kind of believable too.

Might blog about this... have been working on LP stuff for a while
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There is also this excerpt from a comment from the Royal College of Physicians which appears supportive of the Lightning Process. It is part of larger comment on the types of exercise programmes the draft guideline recommended should not be offered, which starts on page 757 of Table 2. Bolding is mine.
Our experts note that there is an overwhelming mass of evidence of the benefits of exercise to the major causes of mortality and morbidity including cardiovascular disease, stroke, diabetes, osteoporosis, depression, cancer, cancer survival, rheumatoid arthritis and osteoarthritis. The WHO report and guidance on physical activity in relation to health and chronic conditions strongly advocates the use of regular exercise to minimise the impact of the above and multiple other chronic conditions. Our experts question whether NICE suggest, despite the overwhelming evidence, that CFS/ME is the only chronic condition in which exercise causes harm as the draft guidelines state. More detail of Our experts’ concerns relating to the evidence evaluation for this section are specified below.

Taken individually, it is possible to see where the committee may have been coming from – for example physical exercise should not be offered as a ‘cure’ or general panacea. Nor are standardised programmes based on fixed increments appropriate – all rehabilitation interventions should be tailored to the individual’s needs.

However, this recommendation appears to dismiss all graded exercise therapy (GET), any programme to address deconditioning and any programme based on principles of osteopathy, life coaching or neurolinguistic processing (such as the Lightning Process (LP)) Our experts note that the decision on LP is particularly arbitrary as it was supported by data from the only RCT, and used a diagnostic definition that meant that all participants had to have the symptom of PEM So it has been banned solely on the basis of qualitative data, which seemed to be mixed.

Our experts note that for such a severe and varied condition, no single intervention will benefit everyone ME/CFS. But there is a large body of evidence from RCTs and Cochrane reviews that GET programmes can provide benefit for a proportion of patients (see below), and there is also evidence from case studies and one RCT that some patients report benefit from LP. GET programmes come in all shapes and sizes (they are by no means all fixed increment regimens).

Our experts fully acknowledge that the randomisation process in RCTs and some of the less personalised GET programmes would have meant that proportion of patients were allocated to exercise programmes that were not well suited to their needs and made them feel worse, but this is not to say that all such programmes should be banned.
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Sarah said:
There is also this excerpt from a comment from the Royal College of Physicians which appears supportive of the Lightning Process. It is part of larger comment on the types of exercise programmes the draft guideline recommended should not be offered, which starts on page 757 of Table 2. Bolding is mine.
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Absolutely stunned that the RCP should stand up for "osteopathy, life coaching or neurolinguistic processing"...
 
Brian Hughes said:
Absolutely stunned that the RCP should stand up for "osteopathy, life coaching or neurolinguistic processing"...
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I feel like cfs "experts" have a tendency to support any old unevidenced woo when it comes to ME, largely because it discredits patients to see them involved with it. I have few conspiratorial leanings on this but i feel this one pretty strongly
 
Sarah said:
There is also this excerpt from a comment from the Royal College of Physicians which appears supportive of the Lightning Process. It is part of larger comment on the types of exercise programmes the draft guideline recommended should not be offered, which starts on page 757 of Table 2. Bolding is mine.
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It is my reasonable expectation that the Royal College of Physicians will come to regret inviting Phil Lightening Process Parker to join the feast.

Having said that. Maybe they feared he could ‘step into’ their bodies if he wanted to, that he might be more likely to do so if they didn’t give him a piece of the pie?

If so, maybe the potential down stream consequences were calculated and trumped by immediate threat.
 
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