NICE ME/CFS draft guideline - publication dates and delays 2020

I initially wrote this in another thread but moving it here as I think it makes more sense here.

(Joan Crawford wrote about Jo Daniels misrepresenting CBT for ME.)

Exactly. When I did CBT, I was always told it was CBT, never GET, but during our sessions I was told to increase the amount of walking I was doing week on week (and was explicitly told to go from 4 minutes to 5 minutes, then 5 minutes to 6 minutes etc), talked about my thought patterns and how my body wasn’t really unwell, it was just software problems..that I should just add a bit more rest to my day and then I’ll be able to keep walking more. Sometimes even when I wasn’t explicitly told to increase, I increased things myself too.

Because I never explicitly was told I had “GET”, and it wasn’t mentioned in the trial information online, it was hard for people to understand I really did go through graded exercise (eg I wrote up a post for ME action, which took me a lot of energy as I was changing it from a blog post that I had, but when someone in the comments pointed out the trial didn’t use the word GET - ME action wrote to me saying, you said you went through GET but the info sheet says there’s no GET, and took my article and picture down from their website).

But actually I believe GET could easily be sneaking in through the back door during “just CBT”, not just for me but for a lot of people. it’s just as bad, because as well as doing the added exercise, you continually gaslight yourself into disbelieving and hurting yourself so you feel you are responsible for your own actions, and because GET isn’t explicitly mentioned - it’s easier for the therapists to get away with it.

So I am worried about the CBT part of the guidelines but am happy there’s lots of people here and elsewhere who will be looking at it all closely.
 
Andy said:
I'd just like to express my thanks to all advocates who have worked to get the best guideline for us that they could - my prediction is that it won't be perfect (from my point of view), as these sorts of documents almost never are. Extra thanks to those patient advocates - in no particular order @adambeyoncelowe , @Keela Too , @saranbonser and any others who I'm not aware of.
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You're welcome. It's been hard work but the end is in sight.
 
Trish said:
All members interested will be encouraged to participate in the forum discussion that contributes to our response. We haven't decided who or how we will produce the final response. Your offer of help is noted with thanks.
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I have actually forgotten which stakeholder I officially represented at the Scoping Meeting although I think it was S4ME. I am also not sure whether I get a chance to comment in my capacity as expert witness. It sounds as if you can comment as an individual or as a stakeholder. As far as S4ME goes at this stage I would want just to add my tuppence worth to the general discussion for the committee to make use of. I may file a statement as expert witness but it depends on how things look when the time comes.
 
lunarainbows said:
But actually I believe GET could easily be sneaking in through the back door during “just CBT”, not just for me but for a lot of people. it’s just as bad, because as well as doing the added exercise, you continually gaslight yourself into disbelieving and hurting yourself so you feel you are responsible for your own actions, and because GET isn’t explicitly mentioned - it’s easier for the therapists to get away with it.
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I share that concern. Even our OT run local service, when we used it some years ago, were claiming to teach pacing, but it was all based on activity diaries, and as soon as you presented them with your diary, they were saying, now what activity are you going to plan to add next week and the week after etc. In other words it wasn't pacing, it was graded activity or some such term. The expectation was all around find your base level then build up activity from there.

I think we need a guideline that makes it clear no forward planning of increases in activity has any place in management of ME.
 
Jonathan Edwards said:
As far as S4ME goes at this stage I would want just to add my tuppence worth to the general discussion for the committee to make use of.
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Thank you, I'm sure that will be helpful.

Jonathan Edwards said:
I may file a statement as expert witness but it depends on how things look when the time comes.
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I hope you are able to do that too, assuming it's necessary.
 
InitialConditions said:
Does anyone know if there is a template document for stakeholders to use for their responses to the draft guidelines?
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Yes! This will be published on the NICE website along with the draft.

It's normally a table in which you have to say what document you're commenting on, the page number and then the line number. Then there is a separate column for your comment.

Responses are welcomed from individuals and stakeholders, but only stakeholder's submissions will be published with feedback from the committee.
 
Andy said:
I'd just like to express my thanks to all advocates who have worked to get the best guideline for us that they could - my prediction is that it won't be perfect (from my point of view), as these sorts of documents almost never are. Extra thanks to those patient advocates - in no particular order @adambeyoncelowe , @Keela Too , @saranbonser and any others who I'm not aware of.
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Absolutely this. Well said @Andy
 
(Sorry to state the obvious, but ... )

I agree that we need to scrutinise carefully what is said in tomorrow’s draft about CBT as so far there is a distinct ambiguity about what CBT in relation to ME involves in practice.

My recollection is that this ambiguity was inherent in the odd NICE guidelines, that drew on the research that falsely claimed CBT is a curative treatment yet defined CBT as a supportive management tool. In effect the outgoing guidelines advocated one thing on the basis of evidence relating to something completely different. Beyond this when you read the patient forums there is enormous variation in what people experience as CBT, this can range from what @lunarainbows described above as GET disguised as CBT right through to my own personal experience of CBT designed to overcome my resistance to pacing myself. (In retrospect though the agreed aim of my CBT was for me do less, there was also a sneaked in assumption that by structuring what I did would ultimately enable me to do more.)

The recent survey of GET and CBT initiated at the request of NICE did not enable us to understand what either involves in practice, it only gave an overview of what recent recipients felt overall. So given the particular confusion about what CBT for ME is it is very hard to evaluate what the results might actually mean.

It is also important remember that while we may feel ‘supportive’ CBT has laudable aims, there has been no research on this in relation to ME/CFS. So we need to look carefully at how the new guidelines define CBT if it is recommended, and what evidence is cited for it.
 
Andy said:
Another appearance of Jo Daniels is in the article linked in this post, Possibility of ME or PVFS after COVID-19, Long Covid, where she is called "one of the leading experts in the treatment of ME/CFS and PVFS in the UK" and she massively mis-represents what CBT for ME (a la PACE) actually is in it.
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So Jo Daniels comments, as someone on the guideline review committee, would seem to be inappropriate to me. Before the guidelines are published, she is making public statements about the strength of evidence for particular 'treatments' (which just so happen to be her field of employment). I'm not sure it quite counts as conflict of interest, it seems closer to potentially breaking any non-disclosure agreement she might have signed (assuming the guidelines agree with her) or she is trying to prejudice the public view of the review outcome (if the guidelines don't agree with her).
 
Peter Trewhitt said:
It is also important remember that while we may feel ‘supportive’ CBT has laudable aims, there has been no research on this in relation to ME/CFS. So we need to look carefully at how the new guidelines define CBT if it is recommended, and what evidence is cited for it.
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I think this wgllbea crucial issue. My suspicion is that it may be suggested that CBT 'tailored to the case' canoe recommended. This seems to beDaniels preference. But although tailoring is perfectly reasonable there needs tone some indication what is being tailored. There should at least be a short description of what the technique involves because that is far from clear at present.
 
Andy said:
So Jo Daniels comments, as someone on the guideline review committee, would seem to be inappropriate to me. Before the guidelines are published, she is making public statements about the strength of evidence for particular 'treatments' (which just so happen to be her field of employment). I'm not sure it quite counts as conflict of interest, it seems closer to potentially breaking any non-disclosure agreement she might have signed (assuming the guidelines agree with her) or she is trying to prejudice the public view of the review outcome (if the guidelines don't agree with her).
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She could be promoting CBT because she fears a review outcome that's bad for CBT and needs new markets.
 
Trish said:
I share that concern. Even our OT run local service, when we used it some years ago, were claiming to teach pacing, but it was all based on activity diaries, and as soon as you presented them with your diary, they were saying, now what activity are you going to plan to add next week and the week after etc. In other words it wasn't pacing, it was graded activity or some such term. The expectation was all around find your base level then build up activity from there.

I think we need a guideline that makes it clear no forward planning of increases in activity has any place in management of ME.
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Similar thing happened to me. A CFS clinic called it pacing but encouraged baseline to do no matter how ill I felt, then increase by ten percent every 2 weeks.
 
Not able to follow the thread and the news on this issue before the weekend but wanted to echo the thanks to our S4ME members on the NICE committee and also 'our' expert witness. :)

Thank you also to everyone who contributed in any other way via the forum's discussions.

As someone else put it on another thread (I think MEMarge?) a crucial aspect of advocacy is not only to improve the current state of affairs but also to just prevent some (more) bad things from happening.

But I very much hope the draft will be a clear improvement compared to the current guideline.

I'm a bit sad that I probably won't be able to contribute to the discussion on the draft, but at the same time I very much appreciate the work of those who truly act on ME patients' behalf. I'm confident that S4ME members will have the best impact.

Also, I'm sure David's 'Trial by Error" piece has been posted on this thread before, but didn't see a link to the reprise. So here's the link:

https://www.virology.ws/2020/11/07/trial-by-error-my-predictions-for-nice-me-cfs-guidance-reprise/
 
Andy said:
I'd just like to express my thanks to all advocates who have worked to get the best guideline for us that they could - my prediction is that it won't be perfect (from my point of view), as these sorts of documents almost never are. Extra thanks to those patient advocates - in no particular order @adambeyoncelowe , @Keela Too , @saranbonser and any others who I'm not aware of.
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Thank you.

Obviously I won't be responding to discussions, but I'll be reading as much as I can.
 
Andy said:
I'd just like to express my thanks to all advocates who have worked to get the best guideline for us that they could - my prediction is that it won't be perfect (from my point of view), as these sorts of documents almost never are. Extra thanks to those patient advocates - in no particular order @adambeyoncelowe , @Keela Too , @saranbonser and any others who I'm not aware of.
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Yes. I have a very pessimistic view I'm afraid, & will just be relieved if despite everyone's hard work it's not essentially the same as before (only worse because once it's reviewed & re-endorsed it will be harder to argue against). Cant tell you how thrilled i'll be to be wrong :)

However i am hugely grateful for everybody's hard work and sacrifices made. I'm certain that whatever the outcome, without that hard persistent slog the outcome would be orders of magnitude worse.
 
Trish said:
I share that concern. Even our OT run local service, when we used it some years ago, were claiming to teach pacing, but it was all based on activity diaries, and as soon as you presented them with your diary, they were saying, now what activity are you going to plan to add next week and the week after etc. In other words it wasn't pacing, it was graded activity or some such term. The expectation was all around find your base level then build up activity from there.

I think we need a guideline that makes it clear no forward planning of increases in activity has any place in management of ME.
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I've seen lately the mantra of... what was it... prioritize, plan, pace? that could be abused in the planning phase to "plan to do more". Will have to be explicitly stated that there is no actual benefit to this, that increase in activity is the end (currently mostly unachievable because of a lack of proper clinical understanding and treatments), not the means.

May need to actually reframe it as pacing down, because for the most part the BPS cult intend to frame it as pacing up so we can get back to our normal speed. Down, so people can keep on walking, never up, that happens naturally and is in fact very difficult to get under control, as people naturally want to do more than ME allows.
 
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