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

FMMM1 said:
The other target should be NIHR - funding body cc DHSC, APPGs (ME/CFS & covid) & ME/CFS & long covid charities.
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I think this (research funding) will be influenced by the outcome of the Priority Setting Partnership, and is also best tackled by organisations rather than individuals. Forward ME will have a lot more clout than any of us trying individually to write to them.
 
Trish said:
I think this (research funding) will be influenced by the outcome of the Priority Setting Partnership, and is also best tackled by organisations rather than individuals. Forward ME will have a lot more clout than any of us trying individually to write to them.
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I'll settled for anyone succeeding but e.g. if you can get an MP to ask a Parliamentary Question ---- concerns that research funding is being wasted --- small changes to methodology needed (like actimetry e.g. FitBit). Then it might yield results. Also, social media--

I listened to an episode of The Political Butterfly Effect last night - e.g. [not the one I listened to]here's an episode that might be of interest to someone from Australia*! Sometimes individuals can be successful; however, I can see the benefits of organisations - let's hope the organisations deliver!


*"Jim Waterson asks if a doomed West End musical left migrants living on a Pacific island."
[https://www.bbc.co.uk/sounds/play/m00146w2]
 
Wonko said:
Do you mean the type of circularity that's been happening in ME research for the last forever?

and still seems to be happening, despite the new GL?
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For all the reasons Jonathan Edwards has enumerated, as far as research is concerned the GL doesn't materially change anything - the exception being any research on CBT and GET for ME/CFS where the GL undermines the validity of further research in that direction.

The circularity in the psych focus research is I think different from the problem of selecting a research population that is 'a priori' taken to be an exemplar of the whole patient population when the research logically has to allow that the whole patient population may have no significant exemplar cohorts. That problem is overcome by appropriate methodology using multiple diagnostic criteria, something which is already happening.

The circularity of PACE et al, although not openly stated and it would be disputed by the researchers, comes from the 'a priori' belief that they knew exactly what the cause of ME/CFS was, and research was just a matter of affirming their belief. There was never any scepticism about their hypothesis (belief) and so they worked in a closed circle - there was no methodological answer to that because that would require abandoning their belief.
 
Trish said:
I think this (research funding) will be influenced by the outcome of the Priority Setting Partnership, and is also best tackled by organisations rather than individuals. Forward ME will have a lot more clout than any of us trying individually to write to them.
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It might well be that the best strategy is to take a year zero attitude and simply work with what is now available and not reference the past.

I'm not sure though that will get to the heart of the pro psych bias present within the NIHR structure. The PSP doesn't mean that the NIHR will be prevented from supporting psych approaches to ME/CFS or even moderating those approaches in terms making them more patient centred. Certainly there would seem no mechanism in the PSP process to impact ongoing contracts to provide salary to psych focused researchers with a history of involvement in ME/CFS. While limited in research resource this salary support - associated with NIHR centres - places researchers with particular perspectives in positions of influence at the heart of NIHR.

Also more broadly I'm not confident in the scientific strength of the choices that the PSP is juggling with and which may lead to a research agenda that lacks robustness - leaving NIHR feeling able to have a freer interpretation of what is required than we might expect of it.
 
CRG said:
The circularity of PACE et al, although not openly stated and it would be disputed by the researchers, comes from the 'a priori' belief that they knew exactly what the cause of ME/CFS was, and research was just a matter of affirming their belief. There was never any scepticism about their hypothesis (belief) and so they worked in a closed circle - there was no methodological answer to that because that would require abandoning their belief.
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Exactly. The first paper on CBT/GET presented it as solution. There was no doubt in the author's minds as to what the problem was and what solution it required.

Judging by his other published papers, at the time Wessely also had an interest in mass hysteria and that is presumably how he saw ME/CFS although he offered only a sanitized version of his views to the public. The talk about deconditioning was always nonsense and just meant to draw patients needing therapy into the therapy they would otherwise have avoided.

For me there are two interpretations of what mass hysteria means when applied to ME. It can mean people who already have a health problem are told they have ME and they begin believing it even if it doesn't make much sense (this is the "patients have depression but want to avoid the stigma of depression by believing in a made-up illness" narrative). The other interpretation is that suggestion can make some healthy people sick (to me, beleiving in this interpretation feels like it requires a certain amount of magical thinking). I'm not sure which of these two interpretations is favored by the BPS people.

My theory on how they came to publish consistently flawed papers is that by repeatedly doing studies they got a sense of what design choices and methods were likely to give results that aligned with their theory. The design choices and methods were as poor as was necessary to get the desired result. The removal of actometers from PACE showed an example of this happening.
 
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Amw66 said:
From the stakeholder questionnaire - zoom meeting next week for discussion with Blake Stevenson who have the Scottish Government commission for engagement
Qiote esasy to respond as other than 1 speciliast nurse we have no " experts". Scottish Good Practice Guide is pretty much out nof date though some of the principles are not too bad.

If anyone wishes to comment/ raise issues I can feed back into a consulting group prior to next week's meeting
Discussion questions - stakeholder review of ME/CFS NICE Guidelines
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Regarding the consultation in preparation for the Scottish implementation of the NICE Guideline - we now have a thread where people can record their feedback:

MEAction Scotland - Stakeholder review of NICE 2021 ME/CFS Guideline to prepare for Scottish implementation - deadline 1 March 2022
 
strategist said:
Exactly. The first paper on CBT/GET presented it as solution. There was no doubt in the author's minds as to what the problem was and what solution it required.

Judging by his other published papers, at the time Wessely also had an interest in mass hysteria and that is presumably how he saw ME/CFS although he offered only a sanitized version of his views to the public. The talk about deconditioning was always nonsense and just meant to draw patients needing therapy into the therapy they would otherwise have avoided.

For me there are two interpretations of what mass hysteria means when applied to ME. It can mean people who already have a health problem are told they have ME and they begin believing it even if it doesn't make much sense (this is the "patients have depression but want to avoid the stigma of depression by believing in a made-up illness" narrative). The other interpretation is that suggestion can make some healthy people sick (to me, beleiving in this interpretation feels like it requires a certain amount of magical thinking). I'm not sure which of these two interpretations is favored by the BPS people.

My theory on how they came to publish consistently flawed papers is that by repeatedly doing studies they got a sense of what design choices and methods were likely to give results that aligned with their theory. The design choices and methods were as poor as was necessary to get the desired result. The removal of actometers from PACE showed an example of this happening.
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The psych approach to ME is one of the starkest examples of confirmation bias in medicine.
 
Sean said:
The psych approach to ME is one of the starkest examples of confirmation bias in medicine.
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I may be repeating myself on this thread but it is something we need to bear in mind. The confirmation bias in ME research is awful particularly in FND papers which have been like that from the start, and remember that Michael Sharpe was co-author with Jon Stone on that paper in 2008.

However I can believe that Stone firmly believes he has finally found the scientific basis of the work of Freud and co. A true believer can't think there is another way of looking at medicine.

I don't think this is true in ME. The biased research for ME has always been done to produce a large body of work that can be produced to save money for the insurance companies with governments being willing to back it because it will save them money too. If there are a hundred papers no one is going to go and check that they are good science. Who would have funded them, how could they pass peer review and who would publish them if they were not valid scientific findings?

Going back to the fifties and before we know that the tobacco companies interfered with the scientific process so it is not wildly unlikely that other companies were did that sort of thing too. It continually amazes me now that much of my life has become history that things that were "" conspiracy theories" in my younger days are now shown to be true.

What is done is done, but when thinking about why so many people are against us the money factor must be considered along with everything else. Basically, a lot of people out there do not think like us.
 
strategist said:
Exactly. The first paper on CBT/GET presented it as solution. There was no doubt in the author's minds as to what the problem was and what solution it required.

Judging by his other published papers, at the time Wessely also had an interest in mass hysteria and that is presumably how he saw ME/CFS although he offered only a sanitized version of his views to the public. The talk about deconditioning was always nonsense and just meant to draw patients needing therapy into the therapy they would otherwise have avoided.

For me there are two interpretations of what mass hysteria means when applied to ME. It can mean people who already have a health problem are told they have ME and they begin believing it even if it doesn't make much sense (this is the "patients have depression but want to avoid the stigma of depression by believing in a made-up illness" narrative). The other interpretation is that suggestion can make some healthy people sick (to me, beleiving in this interpretation feels like it requires a certain amount of magical thinking). I'm not sure which of these two interpretations is favored by the BPS people.

My theory on how they came to publish consistently flawed papers is that by repeatedly doing studies they got a sense of what design choices and methods were likely to give results that aligned with their theory. The design choices and methods were as poor as was necessary to get the desired result. The removal of actometers from PACE showed an example of this happening.
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I don't disagree but my post was more about contrasting the two 'circularities' - I would add 'it's always easier to see other people's failings than our own'. With the prospect of real opportunities for PwME to influence the direction of both research and treatment, being able to identify our own failures of analysis becomes more important than dismantling the failed analysis of others.
 
strategist said:
My theory on how they came to publish consistently flawed papers is that by repeatedly doing studies they got a sense of what design choices and methods were likely to give results that aligned with their theory. The design choices and methods were as poor as was necessary to get the desired result. The removal of actometers from PACE showed an example of this happening.
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Could their choice of selection criteria have also contributed? By its nature, criteria that are focused on medically unexplained fatigue could overrepresent for people who could respond positively to talk therapy and exercise while underrepresenting people who have ME and thus would experience a negative effect to exercise? And the lack of harms evaluation or use of inadequate harms measures would mean studies could not detect the kind of harms relevant in ME on a day to day basis.

I can imagine continued use of Oxford is not really a viable option. But they could continue to use Fukuda, which can include people who do not have ME but have other conditions including depression. Are there other options? NICE 2007? Or some new one? It sounds as though each researcher gets to decide?

CRG said:
The circularity in the psych focus research is I think different from the problem of selecting a research population that is 'a priori' taken to be an exemplar of the whole patient population when the research logically has to allow that the whole patient population may have no significant exemplar cohorts. That problem is overcome by appropriate methodology using multiple diagnostic criteria, something which is already happening.
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Trish said:
I think this (research funding) will be influenced by the outcome of the Priority Setting Partnership, and is also best tackled by organisations rather than individuals. Forward ME will have a lot more clout than any of us trying individually to write to them.
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I haven't been following the PSP so this may be discussed elsewhere. But I'm wondering if in addition to priority areas of research to study, the PSP will also make priority recommendations on study design and instrumentation such as how patients are selected and how harms are assessed?

For instance, that Fukuda should not be used because it does not require any key features such as PEM and instead focused on medically unexplained fatigue and includes people with other conditions. Or as @CRG notes, that multiple criteria (including e.g. CCC, ME-ICC) should be used as some researchers have done?

Or on the use of appropriate harms measures that explicitly evaluate worsening of symptoms and function, a worsening of tolerance for exertion, etc. Would need to be designed but these are critical for a disease with sensitivity to medications and a negative reaction to all types of exertion.

This post has been copied and discussion moved to a new thread:
Use of selection criteria in ME/CFS research
 
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Mithriel said:
I don't think this is true in ME. The biased research for ME has always been done to produce a large body of work that can be produced to save money for the insurance companies with governments being willing to back it because it will save them money too.
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I agree Mithriel.

As far as I see it, pro psych research into ME is favoured to fit the cost-cutting agendas.

Given my own experience of attending ME/CFS specialist services. NHS England has pretty much handed over their clinics in support of attaining skewed clinical evidence for patient care based on psych research to cut costs. This is a coordinated effort. I have evidence of the NHS opting not to carry out objective tests used to diagnose ME/CFS. How many people who attended the fatigue clinic performed an active stand test during their initial assessment? It can/should be one of the tests performed to diagnose ME/CFS in person.

How many people are asked about any past traumatic events they've suffered that could have triggered the condition during CBT? Trick question because in medical terms, trauma covers a lot of situations such as head trauma associated with motor accidents, etc. Admittedly, I defaulted into thinking the question was only about emotionally traumatic situations. Even if someone was to disclose a car accident being a particularly traumatic event, the psychologist - not neuropsychologist- may question the patient about the thoughts and feelings they have about the event or had around the time of the event, such as guilt, etc. The patient's information is then stored and used for clinical evidence purposes. I hope you can see where I am going.......

Deconditioning can even mean several things - the process of losing physical strength through being ill, injured and inactivity. The BPSers have a way of choosing/omitting their words, so you're not entirely sure what is meant. :unsure:o_O
During the guideline development, it was some patients may be harmed. GET, and CBT works as part of medical care. I've never heard of BPSers mention this some and part before.

It does not even make sense for psych led clinics to provide care for a neurological condition. I'm sure pwME have said this for years, but our voices have been ignored in line with not placing too much input from patients as favoured by GET proponents. Yet Long Covid comes along, and official guidance states psych led clinics are inappropriate. Based on what? I'd like to know how NICE are differentiating between the two.
 
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CRG said:
I don't disagree but my post was more about contrasting the two 'circularities' - I would add 'it's always easier to see other people's failings than our own'. With the prospect of real opportunities for PwME to influence the direction of both research and treatment, being able to identify our own failures of analysis becomes more important than dismantling the failed analysis of others.
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I think on this one I could riff and think of all sorts but can't get past that if someone chooses to hire a psychosomaticist for a trial (didn't PACE actually begin/get awarded in 2003 or something even if it wasn't published until 2011), not exploratory research, and then fill the guideline that noone knew was going to be put in place with psychosomatic people in 2004-7 (assuming the same 3yr thing) then you know what you want and expect.

Intriguing if these dates I'm hoping I've remembered correctly add up because that would mean that, if the 2007 guidelines were 3yrs in the making, and recruitment to the panel took 6mnths-1 year .. well that would seem to say that both things happened and were being set in train around the same time
 
RoseE said:
Apologies if this has been discussed before, but I didn't find it via a search of this thread.

Does anyone know why the NICE 2021 guidelines do not include Orthostatic Intolerance, as the IOM 2015 do?

Refer Box 2 under https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#suspecting-mecfs

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It does include it but it is not one of the mandatory criteria. It is listed just a little bit below the criteria as one of the potential additional symptoms:

1.2.4 Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:

- orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position

- temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold

- neuromuscular symptoms, including twitching and myoclonic jerks

- flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches

- intolerance to alcohol, or to certain foods and chemicals

- heightened sensory sensitivities, including to light, sound, touch, taste and smell

- pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.
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RoseE said:
Does anyone know why the NICE 2021 guidelines do not include Orthostatic Intolerance, as the IOM 2015 do?
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The criteria are designed to indicate how medical personnel can identify ME, not as a full description of ME. The two things are quite different. Criteria for identification often do not include many common features of an illness because they do not discriminate or are not defining for the illness.

Unfortunately, committees who devise criteria often get very confused about what they are trying to do. Many of the previous sets of criteria try to include all features and that is inappropriate for diagnostic criteria. It might be useful for a book chapter but that has a different purpose.
 
Wyva said:
It does include it but it is not one of the mandatory criteria. It is listed just a little bit below the criteria as one of the potential additional symptoms:
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Jonathan Edwards said:
The criteria are designed to indicate how medical personnel can identify ME, not as a full description of ME.
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Thank you so much! It's a while since I read all the guidance all way through, and was in selective reading mode. Or was that 'blinker mode'!?
 
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