NICE ME/CFS guideline - draft published for consultation - 10th November 2020

[Kirsten]

That's my impression. They've moved on from deconditioning and, in some cases, from conscious false illness beliefs. It's now more about subconscious "learned" behaviour, i.e. your brain interprets harmless input as a threat and reacts (subconsciously) with the sickness response. Alternatively it's central sensitisation. Either way, the treatment is CBT or some form of brain training intended to make your brain feel safe, or GET to slowly desensitise your brain from reacting to exercise. So the illness model changes but the treatments remain the same - though they'll get new names no doubt, to make it less obvious.

Needless to say GET and CBT (under whatever new names) still don't work - that we have plenty of evidence for. And that's totally irrespective of whether this new illness model is correct or not. AFAIK there's no actual evidence that it is any more true than the old deconditioning/false illness beliefs model but even if it turns out to be correct, the main point is that GET and CBT still don't work.

Do you think that even though the new NICE guideline sort of gives a backdoor enterence to this, that because the NICE guide also says clearly that exercise and CBT should not be given as curative treatments, that we could then complain if they were given? At the moment, we can't complain because they're "just following guidelines"... and often they seem like nice, just midguided people. But to keep doing GET, even by a different name or underlying theory, it would still be being offered curatively, which would be against the new guideline. Perhaps this, in absense of a yellow card system, is how patients going forward hold people to account?

 

[Sean]

Certainly, I was led to believe that PACE was ancient history of no relevance to current practice.

I will believe that when they no longer cite PACE, except as an example of what not to do.

Yes and no, I think the public prejudices were to a considerable degree promoted by the BPS brigade, courtesy of the media, to set the scene so they could more effectively promote their agenda.

Bootstrapping.

 

[Esther12]

Do you think that even though the new NICE guideline sort of gives a backdoor enterence to this, that because the NICE guide also says clearly that exercise and CBT should not be given as curative treatments, that we could then complain if they were given? At the moment, we can't complain because they're "just following guidelines"... and often they seem like nice, just midguided people. But to keep doing GET, even by a different name or underlying theory, it would still be being offered curatively, which would be against the new guideline. Perhaps this, in absense of a yellow card system, is how patients going forward hold people to account?

I'm finding it so difficult to think through these things while reading the new draft. It's so complicated.

Thanks so much to all of the patients involved in this process - I still haven't gotten through the draft [I've just realised it came out ten days ago... I've had some distractions, but still], and I can only imagine what a herculean task contributing to this must have been, especially without being able to talk things through with other people.

My impression so far is that a lot of effort was putting into find a political compromise that would hold and was likely to minimise the harms done to patients of a medical system that has problems built into it. I've sometimes gotten stuck reading through just a small bit, flitting between the definitions it provides and trying to work out what, in practice, it's likely to mean.

I'm sure there are going to be parts that cause problems in ways that it will be hard to spot, and bits that should be good but need to be strengthened... and parts that certain professionals will be keen to change against our interests. Hopefully we can try to work out some of the key things to try to improve (and hold) over the next month.

 

[Sean]

What @Esther12 said.

As I said earlier in this thread, that we need to ask for more time. This document, and the language used in it, needs very careful scrutiny and criticism. The amount of time we have been given to respond to the draft is inadequate given its complexity and importance, our capacity to do such work in that time frame, and that it took NICE so long to get it out.

I would like at least another month.

 

[Ravn]

Do you think that even though the new NICE guideline sort of gives a backdoor enterence to this, that because the NICE guide also says clearly that exercise and CBT should not be given as curative treatments, that we could then complain if they were given? At the moment, we can't complain because they're "just following guidelines"... and often they seem like nice, just midguided people. But to keep doing GET, even by a different name or underlying theory, it would still be being offered curatively, which would be against the new guideline. Perhaps this, in absense of a yellow card system, is how patients going forward hold people to account?

Depends how clever they get with their rebranding. I expect something like PAFIAT (personalised and flexible illness adaptation therapy) or something similar that can mean anything and everything. They'll dial back on terms like cure, exercise, and pushing through symptoms. Instead we'll be hearing a lot about improvement in function and quality of life through personalised management plans. Who could possibly object? If the management plan contains stuff that looks suspiciously like "pacing up", well, that's not GET because it's personalised.

[In case anyone missed it, I'm feeling a little cynical when it comes to the BPS lot. I do hope we can shut as many backdoors on them as possible with the new guidelines.]

 

[Andy]

Behind a log-in/paywall.

Why the new NICE guidelines are a breakthrough for ME sufferers like me
https://www.telegraph.co.uk/health-fitness/body/new-nice-guidelines-breakthrough-sufferers-like/

 

[Sly Saint]

Does anyone have insight into this quote from a Bristol physiotherapist actually praising the new guidance?

Pete Gladwell, a clinical specialist physiotherapist and team leader of the Bristol CFS/ME service at North Bristol NHS Trust, welcomed the proposed change in advice.

“Since the last guideline was published in 2007, a significant body of research has been published which highlight the dysregulation of biological systems in ME/CFS. These changes cannot be explained by deconditioning, so our NHS service has for some time been moving away from a GET approach, which suggests that reversing deconditioning can lead to recovery,” he said.

see https://www.s4me.info/threads/bacme...e-syndrome-me-cfs-oct-2020.17360/#post-295616

"our NHS service has for some time been moving away from a GET approach"

If this is true then you have to question the ethics of keeping quiet about it for so long.

They still supported MAGENTA,GETSET,FITNET-NHS and referred to the PACE trial in their literature up until very recently.
None appear to have questioned the continual recommendation of Trudie Chalders books on chronic fatigue by the NHS which includes:

What does this book include?
Part One of this book aims to help you to understand your problem. It describes possible causes of fatigue and discusses factors that may be contributing to maintaining your fatigue.
It also gives some possible explanations of other symptoms that are common in people with chronic fatigue syndrome.

Over time, reduced or irregular activity and increased periods of rest cause physical changes in the body. These changes can both exacerbate the unpleasant sensations of
CFS and cause additional symptoms such as increased muscle pain during exercise. It is important to point out that these changes are reversible with physical rehabilitation and/or exercise.

see https://www.s4me.info/threads/books-that-are-recommended-by-nhs.17857/

The CFS/ME services were set up 2004-2006 clearly creating the infrastructure for the 'roll-out' of 2007 guidelines and the service models were pretty much as they are now.
In fact much of the language in the new draft guidelines is very similar to that used in the documentation outlining the services that were being set up then.
see
https://www.s4me.info/threads/nice-...-10-multidisciplinary-care.17706/#post-303051

 

[Trish]

This sounds very much the line that is being sold in a united front by psychologists and physiotherapists like those that I met at the NICE committee. It was suggested that my critique of PACE was irrelevant because therapists have moved on from the deconditioning idea, which is no longer the basis for treatment. Treatment now is flexible and person based and based on what therapists know from personal clinical experience works.

I think there is a major concern that the rewrite in the guidelines is exactly this 'what we know works' (and has also been carefully worded to sound OK to the patients). I strongly suspect that a good deal of discussion has gone on in the BACME community to produce this united story.

The real difficulty I see is that what is now written looks pretty reasonable if one assumes that therapists no longer assume that somehow they are treating people rather than supporting them and that they no longer confuse objective with method (i.e. doing more). But there are a few tell tale signs that nothing has changed in the therapist mindset - and I would be very surprised if it had for the majority. Like Lillebeth Larun, they are dedicated to making people better with exercise.

I suspect that the therapists are completely dissociated from the PACE authors now. Certainly, I was led to believe that PACE was ancient history of no relevance to current practice.

There are two different motivations at play. One is job retention (therapists). The other is protection of academic reputation (the PACE crowd). PACE has fallen, so the therapists are pursuing a different approach.

After the initial euphoria and a quick glance through the guideline, I have now come down to earth with a bump. So much so that I felt quite despairing and took a couple of days off from the forum to recover my equanimity and return to the fray.

I am not criticising the patient members of the guideline group, or the experts who really understand ME, but there must have had to be some compromises to get the therapists on the group who currently practice CBT/GET to sign off on the draft. They are defending their own and their colleagues jobs. So it's up to us in the responses to fight against that.

If you read the section on management, particularly the part about offering what is, in effect, graded exercise under a new name, once people have found their baseline, I fear the clinics will get the green light to continue what they are doing.

We really need experts like you, @Jonathan Edwards, to point out that there is no evidence that any encouragement to exercise or for offering of support with increasing exercise, whether the patient 'wants' it or not, and whether flexible or rigid, is justfied for ME.

The danger is still there in this approach. It's all to easy to keep pushing a bit, and end up with a very bad crash or long term relapse.

And equally that there is no evidence that CBT is the most appropriate context in which to help people manage their symptoms. Why not a specialist nurse?

The guideline is supposed to be evidence based, not based on the 'experience of the members of the committee'. That needs to be made clear, and those sections removed.

@Jonathan Edwards, will you be making a submission to the consultation? I hope so.

 

[Jonathan Edwards]

I don't think is that bad, but I think it is worth pointing out that the guidelines are based opinion rather than evidence and this needs to be explicit.

I do not plan to make a submission myself. Any thoughts that come to my mind I will put down here forepeople to consider. If S4ME were to ask me for a few key points to quote I would be happy to do that.

They are likely to be the removal reference to 'fixed' increments in activity; the continuing concern that objective issuing confused with means; that the overriding priority is to do no harm, so anything that looks like recommending deliberate increases in activity must not be part of the recommendation, since this is the aspect of GET for which there is concern; that there is no reason to specify CBT under psychological support.

 

[Robert 1973]

This sounds very much the line that is being sold in a united front by psychologists and physiotherapists like those that I met at the NICE committee. It was suggested that my critique of PACE was irrelevant because therapists have moved on from the deconditioning idea, which is no longer the basis for treatment. Treatment now is flexible and person based and based on what therapists know from personal clinical experience works.

This is very much the sort of nonsense that celebrity GP Phil Hammond (who works in one of Crawley’s CFS clinics) has been saying for a while. Where are the clinical trials that provide evidence for this approach? (And God help us if we waste another decade on a multimillion pound trial trying to prove that whatever it is they think they are treating patients with in the clinics is effective at treating whatever it is they think they are treating.)

I remember Dr Hammond saying Twitter that his patients (children) are always given a choice about whether they want to try the treatments they offer. GP to child: “So you’re feeling really unwell? Would you like to try this treatment that works really well and is 100% safe? Or would you like to have no treatment, and never get better? It’s entirely up to you.”

I see that he’s sort of admitted that he was wrong about Covid-19 – although he doesn’t seem to have acknowledged that celebrity doctors telling people not to worry too much about it and just make sure they have lots of sex (I paraphrase - see this and this thread) is likely to have resulted in more death.

 

[Simbindi]

Worth re-reading this:

https://www.meaction.net/wp-content...-ME-services-Survey-report-by-MEAction-UK.pdf

 

[Caroline Struthers]

Got a rapid response to the BMJ article published too https://www.bmj.com/content/371/bmj.m4356/rr-2. It concentrates on the Cochrane reviews and calls (again) for them to be withdrawn. I will write to the Editor in Chief of Cochrane and also put a comment on both of the reviews. Belt and braces!

 

[lunarainbows]

The guideline is supposed to be evidence based, not based on the 'experience of the members of the committee'. That needs to be made clear, and those sections removed. .

There isn’t a lot of published evidence about what helps us. If you want to get rid of everything relating to the committees experience, you will then get rid of (looking at the report and which parts they say are guided by the committees experience, and where there’s not a lot of evidence):

Maintaining independence (Occupational therapist related stuff)
Self monitoring techniques - eg heart rate monitors
Physical maintenance - stretching etc
Rest and sleep
Orthostatic intolerance
Managing nausea
Dietary management and strategies - especially for those with severe and very severe ME
Managing flares and relapses (resting etc)
Training for health and social care professionals

Even the access to care section - hospitals - although it doesn’t mention their experience, it says that the committee are “aware” about common light and noise sensitivities, aware of how difficult it is for severe / very severe ME.

If the committee is not allowed to make recommendations based on this awareness and their experience and only rely on published evidence - then the guidelines would not be fit for purpose, especially for severe and very severe ME where there is very little published evidence about the intricacies of our experience and what we need. Yes we recently had those surveys from the ME association and where ME action did the report, which was really good, and another severe ME survey, but it still doesn’t capture anywhere near the amount of detail that’s needed in the report.

From the existing sections on hospital care, and the dietary parts about severe / very severe, it’s clear that at least some of this really very good stuff has happened because the committee have been allowed to draw on experiences. I would be very, very wary and infact extremely worried about recommending the guidelines should no longer be allowed to do that.

I agree that the activity increasing, CBT stuff, all of that needs to go, but that’s a separate issue.

 

[Trish]

From the existing sections on hospital care, and the dietary parts about severe / very severe, it’s clear that at least some of this really very good stuff has happened because the committee have been allowed to draw on experiences. I would be very, very wary and infact extremely worried about recommending the guidelines should no longer be allowed to do that.

I agree that the activity increasing, CBT stuff, all of that needs to go, but that’s a separate issue.

Very good points, I was intending to refer specifically to the GET-lite and CBT sections where it is recommending treatments that aren't justified by evidence and that are versions of treatments that cause harm. That's different from experience that relates to patients needs.

 

[lunarainbows]

Very good points, I was intending to refer specifically to the GET-lite and CBT sections where it is recommending treatments that aren't justified by evidence and that are versions of treatments that cause harm. That's different from experience that relates to patients needs.

Definitely. I agree this needs to go, I actually think there may be pressure from all the various ME charities so I’m hopeful this will all go. But, I don’t think it’s a good idea to focus on the fact that its based on the committees experience and should be based on evidence, and that’s why it should go - when S4ME submits. Because then that throws up the issues I mentioned above. There are many other things to point to eg as you say, the harm, GET lite, etc.

 

[Ravn]

There isn’t a lot of published evidence about what helps us. If you want to get rid of everything relating to the committees experience, you will then get rid of (looking at the report and which parts they say are guided by the committees experience, and where there’s not a lot of evidence):

Very good points, I was intending to refer specifically to the GET-lite and CBT sections where it is recommending treatments that aren't justified by evidence and that are versions of treatments that cause harm. That's different from experience that relates to patients needs.

Based on the premise of 'first, do no harm' I think we can have different levels of evidence for:

a) recommendations intended to prevent harm - here it's reasonable to rely on patient experience where no other evidence exists

b) recommendations for treatments intended to cure (or significantly improve) ME - here we should insist on a higher level of evidence from quality research

 

[Jonathan Edwards]

Based on the premise of 'first, do no harm' I think we can have different levels of evidence for:

a) recommendations intended to prevent harm - here it's reasonable to rely on patient experience where no other evidence exists

b) recommendations for treatments intended to cure (or significantly improve) ME - here we should insist on a higher level of evidence from quality research

Yes, that captures it.

 

[Barry]

Based on the premise of 'first, do no harm' I think we can have different levels of evidence for:

a) recommendations intended to prevent harm - here it's reasonable to rely on patient experience where no other evidence exists

b) recommendations for treatments intended to cure (or significantly improve) ME - here we should insist on a higher level of evidence from quality research

Absolutely. As I've said before, in something like aircraft safety, the level of evidence required to ground an aircraft because of safety concerns, is considerably less than the level of evidence needed to allow it to fly again. Many more people would be harmed if those two thresholds were both the same, either due to massive delays before activating the safety action, and/or too low a threshold of safety corrections. It's fundamental to safety engineering, not because it is peculiar to engineering, but because it is natural to life.

 

[lunarainbows]

Based on the premise of 'first, do no harm' I think we can have different levels of evidence for:

a) recommendations intended to prevent harm - here it's reasonable to rely on patient experience where no other evidence exists

b) recommendations for treatments intended to cure (or significantly improve) ME - here we should insist on a higher level of evidence from quality research

Based on this, what about the “energy envelope” theory and staying under it, part of activity management? As that’s based on committee experience (patient experience) as well, and can help improve symptoms over time in some, although it’s main aim is to help keep under the energy threshold. In the same way as the “increasing activity” part is also meant to help improve functioning.

I am kind of wary of this argument because there are some parts that could be argued - are not to do with “do no harm”. The hospital part clearly is, of course. As well as severe ME sections. But other parts - like heart rate monitoring or other devices, doesn’t really come under do no harm, as many people live without those and don’t come to harm. Yet it’s still being recommended. Same for the nausea section, same for other sections. Yet those recommendations are still in there, based on patient experiences. Those recommendations are not based on preventing harm, but on helping PwME adjust to symptoms and live with them and in some cases, help some symptoms improve.

 

[Simbindi]

Yet it’s still being recommended. Same for the nausea section, same for other sections. Yet those recommendations are still in there, based on patient experiences. Those recommendations are not based on preventing harm, but on helping PwME adjust to symptoms and live with them and in some cases, help some symptoms

Some of these are merely suggestions, rather than 'recommendations', i.e. just things that are suggested that may help other patients.

Regarding the nausea section, I don't think specific recommendations should be made, it should just say that GPs and consultants should offer the same treatments for symptomatic relief as they would in any other condition (sorry, just the concept, I am out of oomph to be able to word this correctly).

I have been taking anti-nausea meds and various pain relief for most of the time I have had M.E. I was originally given these to manage my symptoms, without them I would never have been able to fulfil my role as a parent.