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

Professor Edwards was at the round table, why didn't they make these comments to his face?

I hope the expert testimony becomes the tread that unravels the whole CBT system. I'm very thankful for the testimony and all you've done for the ME community.

My favorite part of the Consultation Comments and Responses is the denial, "we do not accept this". I would love to yell at the psychiatrists, "physician heal thyself".
 
Association of British Neurologists :
The committee seem unaware of the substantial diagnostic overlap between ME/CFS and Fibromyalgia(Clauw, 2019)(Petersen et al., 2020). Fibromyalgia is defined by chronic widespread pain, which is present, as this report notes in up to 80% of individuals with ME/CFS. The other core components are unrefreshing sleep, cognitive difficulties and fatigue which are also core features of ME/CFS. It would have been appropriate for the committee to acknowledge this overlap and signpost readers to draft NICE guidelines related to chronic primary pain (fibromyalgia) which take a substantially different view of the evidence.
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NICE:
Thank you for your comment. Based on the evidence ( Evidence review D) and the committee’s clinical experience, they agreed the four criteria for the diagnosis of ME/CFS were fatigue, post-exertional malaise, unrefreshing sleep and sleep disturbance (or both), and cognitive difficulties. Key to the diagnosis of ME/CFS is the presence and combination of the four symptoms. Pain may be associated but is not exclusive to with ME/CFS, this was supported by the IOM diagnostic criteria (2015). The committee note that pain is the dominant symptom in fibromyalgia and as such the two populations are differentiated.
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ABN:
We believe this is an inaccurate description of the impact of these recommendations on services. In fact, the recommendations are likely to make it harder for patients with ME/CFS to access CBT, particularly if their priority is to improve their fatigue or physical functioning rather than psychological distress. We are also concerned that the recommendation is inconsistent with the NICE guideline for chronic primary pain (currently under consultation) which recommends CBT for fibromyalgia (an illness with considerable overlap with ME/CFS). This inconsistency will make the recommendation difficult to implement in clinical practice.
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NICE [bolding mine]:
Thank you for your comment. The committee have revised the wording of their recommendations so that they are less negative regarding CBT. However, they continue emphasise the need for patients and clinicians to be informed about the limitations of this therapy for people with ME/CFS. We anticipate there might be a reduced demand for CBT, but it remains an important part of management that some people with ME/CFS will benefit from. That recommendations might differ to those in other guidelines, including those on primary chronic pain, highlight the need for a specialist ME/CFS team to develop a care plan for people with ME/CFS, whose treatment response is so different.
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I'm not that far through the stakeholder comment tables, but it appears there may be a number of NICE comments that would be worth saving and using for advocacy purposes, as well as to ensure the guidelines are properly implemented.
 
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RCGP said:
Can the committee consider adding that those treating and researching this condition may have also experienced prejudice? This will ensure the guidance acknowledges the difficulties clinicians and researchers also face in this field which will need to be addressed in order to ensure that more clinical evidence is generated on this important issue.
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This is genuinely "let them eat cake" level of being detached from reality. Sounds exactly like a millionaire complaining of having to look at homeless people and how it ruins their day. Holy narcissism, Batman. What is it doing taking up so much place in medicine, of all places?
 
rvallee said:
This is genuinely "let them eat cake" level of being detached from reality. Sounds exactly like a millionaire complaining of having to look at homeless people and how it ruins their day. Holy narcissism, Batman. What is it doing taking up so much place in medicine, of all places?
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I'm not surprised. More bleating from people we don't want to come anwhere near us thank you. It would be great if they would all stop doing their crap research and harmful treatments, and leave the field to those who know what they are doing.
 
Esther12 said:
More and more, I wish that meeting had been recorded.
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The reason NICE gave for not recording it was to allow all the attendees to 'speak freely'. So the four RC attendees who signed the letter in the BMJ (not sure where else it was published) had absolutely no excuse for not raising their concerns at the roundtable meeting.

Edit: NICE did that for them and invited Dame Carol Black to chair the meeting, someone they cannot say would be unsympathetic to a biopsychosocial approach.
 
Simbindi said:
The reason NICE gave for not recording it was to allow all the attendees to 'speak freely'. So the four RC attendees who signed the letter in the BMJ (not sure where else it was published) had absolutely no excuse for not raising their concerns at the roundtable meeting.

Edit: NICE did that for them and invited Dame Carol Black to chair the meeting, someone they cannot say would be unsympathetic to a biopsychosocial approach.
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It’s passive aggressive behaviour - the whole thing was set up for them to discuss like adults but….
 
anniekim said:
https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-4
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OMG the Association for British Neurologists are so steeped in the BPS culture, this doc is gripping and essential reading!

Long, long diatribes about the "evidence". Replete with long lists of references to work of BPS believers, including Hotopf and of course all the usual British BPS suspects. Who wrote this? It can't be an unbiased outsider, it must be someone deeply entrenched in the BPS culture.

Lots of reliance on "there's no evidence for XXX ". Which is always a defence for maintaining current consensus - for which no evidence exists.
 
North Bristol NHS Trust - CFS/ME Service said:
Prof Edwards puts forward the idea that placebo is due to “positive thinking” but does not seem to acknowledge the biological element of placebo
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Yes that is because Prof. Edwards understands what words mean. A placebo is a substance or procedure that is designed to have no therapeutic benefit. By definition it has no biological effect. These people are morons.

Simbindi said:
That's because they're the newly diagnosed, therefore the most naïve and 'trusting of the system' patients. Give them a year or two and they'll progress to being part of the 'doom and gloom' and 'angry' mob!
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I'm under a year and I think I'm here.

Trish said:
I think there's a lot of fear coming across that what JE's testimony does is show their so called trials are built on sand, and need a storm like this to blow them over completely.
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Perfect. And — again — thank you @Jonathan Edwards

Trish said:
It would be great if they would all stop doing their crap research and harmful treatments, and leave the field to those who know what they are doing.
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+1
 
I feel like every single one of these people sending in comments from their organisation needs basic awareness of ME. A copy of the Purple book and link to Nina Muirheads CPD module to each would be a starting point. Don’t think it’s feasible as presumably NICE wouldn’t release the contact info or agree to pass on a communication from ME organisations.
 
SNT Gatchaman said:
Yes that is because Prof. Edwards understands what words mean. A placebo is a substance or procedure that is designed to have no therapeutic benefit. By definition it has no biological effect. These people are morons.
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This is a wily trick, @SNT Gatchaman. With the advent of fMRI, there are a whole new host of ways you can claim something has a "biological" effect when really it doesn't, not in the usual sense of the word.

For example, did you know that six weeks of mindfulness training can change your grey matter?
https://www.sciencedirect.com/science/article/pii/S092549271000288X

Of course, if we didn't change biologically with each experience, we'd have no memory of it afterwards! But now there are whole new ways people can bullshit about the "biological" benefits of their favourite form of woo.
 
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Woolie said:
OMG the Association for British Neurologists are so steeped in the BPS culture, this doc is gripping and essential reading!

Long, long diatribes about the "evidence". Replete with long lists of references to work of BPS believers, including Hotopf and of course all the usual British BPS suspects. Who wrote this? It can't be an unbiased outsider, it must be someone deeply entrenched in the BPS culture.

Lots of reliance on "there's no evidence for XXX ". Which is always a defence for maintaining current consensus - for which no evidence exists.
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My money ' s on Stone.
Disciple and currently empire building with FND
 
Woolie said:
This is a wily trick, SNT Gatchaman. With the advent of fMRI, there are a whole new host of ways you can claim something has a "biological" effect when really it doesn't, not in the usual sense of the word
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Lol and of course whenever anyone mentions "biological effects demonstrated by fMRI" it is traditional to reply with the words "dead salmon".
 
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