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

[Simbindi]

Bullet 5 1.11.13 of NICE guideline said:
If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:
[..]

• making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits

I think the important part of this is that the guideline does not state that an individualised programme will (or should aim to) increase the patient's overall energy limits. For example, the physical capacity of the body to achieve a time limited activity could be increased with better resting, so it may appear the person is 'functioning better' when what is happening is they are managing their existing physical capacity better and therefore able to achieve more in terms of specific physical activities. Again, some very gentle flexibility exercises done within a person's energy limits, might help achieve improved physical ability and strength for achieving certain tasks. Of course, whether this is how the clinics are interpreting the new guidelines is a different matter that will need monitoring.

 

[Sarah]

I agree, you cannot have it both ways. But, I personally think it reasonable to consider the language in that particular statement consistent with the recommendation I quoted. RCPCH have not written that a programme will "increase abilities", they have written "improve abilities". It's difficult to fault the quoting of text from the guideline itself. The RCPCH page does include quotes of the recommendations in text boxes, including 1.11.10 re only offering if the patient is ready or would like to incorporate an activity programme.

 

[Simbindi]

The give away is when the clinics refer to patient recovery from ME/CFS, via using their 'therapies'.

 

[rvallee]

The NICE guidelines provide a positive, and from what I have seen of data correctly, space for cognitive therapy. It does not cure ME, but it can provide a better quality of life for some patients."

There is no evidence for CBT "improving the quality of life" of pwME, it's way too vague and broad a concept to be evaluated anyway. This is just hopium. We need accurate things to be said, not people's wishes and dreams about what could be if magic existed in this universe.

 

[Jonathan Edwards]

RCPCH have not written that a programme will "increase abilities", they have written "improve abilities".

That is as bad, though.

It is the implication of cause and effect that is the problem.

The broader text of the guideline gives a clear idea how the detailed text should be read. The de-recommendation of protocols for which there is no evidence provides a clear context too. Any slight shifting around of words with a different framework is unjustified if it allows the original guideline to be misinterpreted.

 

[Keela Too]

As I see it, if we can reduce PEM, then we can hopefully reduce the sort of payback that carries a high penalty (compare this to the high interest rates charged on an overdraft by loan sharks).

IMO if we can manage our energies to stay with our personal boundaries, then the very high payback/interest rates should mostly be reduced, thus allowing for more of our limited energies to be spend productively, rather than sunk into the black hole of PEM and interest repayments. (With recognition that the Severe may not have the luxury of this management option.)

Nothing that I know of can increase the actual amount of energy we have available on a long term basis. We can only try to manage & adjust our lifestyles to make the best use of what we have. (Though again there can also be a spontaneous change in either direction, and for some folk available energy seems to be provided in variable waves about a mean amount rather than at a consistent rate. All this makes it tough for anyone but the individual to judge.)

I think this is where patients and some practitioners part ways. Some practitioners think the changes they see can be induced by their training - if they can just find the right formulation of words to deliver to patients, and if patients would just comply, then their magic would work!

As far as I am concerned there seems to be no way to induce an increase in available energy through any behavioural means. It’s a case of just coping as best you can day to day, and waiting to see if you get lucky!

 

[Suffolkres]

Do you mean on Twitter? I'm not sure it's a good idea to bother Peter and Ilora with this. Their job is done.

....but Peter is a paediatrician and expect he is a member of the RCPCH?

 

[FMMM1]

waiting to see if you get lucky!

I do wonder if something could be learned from full genetic testing and/or the NIH's intensive study of individual patients (which identified some misdiagnosis?).

In terms of genetic testing, we do have Chris Ponting's genome (GWAS) study - starting in January I believe.

 

[dave30th]

The guidelines make it clear that exercise is not to be used as a way of improving physical abilities -since this implies the assumption that it is overcoming deconditioning.

That would seem to be the implication, but couldn't they also say they're doing it to retrain body parts rather than because of deconditioning? They seem to hinge their interpretation on the "fixed" incremental aspect, so if it's incremental but not "fixed" they can assume they can get away with saying it's ok.

 

[Hutan]

The guidelines make it clear that exercise is not to be used as a way of improving physical abilities -since this implies the assumption that it is overcoming deconditioning.

I'm with Sarah on this. The RCPCH commentary doesn't say much, but I don't think what they do say is wrong. The guidelines do suggest physical activity may help increase physical ability.

The guideline does not stop exercise therapy being offered or even being advised so long as it isn't offered as a cure; isn't based on deconditioning or exercise avoidance theories for the perpetuation of ME/CFS; isn't GET as defined by the guideline (i.e. fixed increments); the person is told that it doesn't help everyone and some people find their symptoms get worse; the person says they want it; and the person stays within their energy limits (i.e. does not routinely experience PEM). While there is that requirement that exercise therapy not be based on deconditioning or exercise avoidance theories, it's pretty easy to get around that by just saying 'we don't know how this works, but it seems to help some people'.

The guidelines really don't go very far in limiting exercise therapy. As @Keela Too says, the main (and very important) safeguard gained in the guideline is that requirement that the person stays within their energy limits. Hopefully that will prevent people being pushed into repeated PEM. That is the key point we need to try to ensure clinicians understand.

The thing that bothered me most about the RCPCH commentary was the clear signalling that children and young people developing Long Covid should not be assumed to have ME/CFS. This may be understood as 'don't diagnose people with ME/CFS if their symptoms are the result of Covid-19. This allows them to be treated under the 'Effects of Covid-19' guideline, which is a great deal more vague, and where essentially any rehabilitation approach you like can be applied.

 

[Trish]

I would rather the whole section on activity and exercise programs in the guideline wasn't there at all. There's no evidence any such programs help anyone improve anything. I recognise it was probably one of the things that had to be compromised on to get the guideline agreed, and on that basis I accept it's there for now.

It's saved from being disastrous by the caveats that it's only for those who want it, not everyone, and it specifies staying within energy limits. But that also gives too much leeway for therapists to persuade patients that they need to do the programs in order to improve their function. That's not evidence based and has potential for harm because many don't realise they are going beyond their limits until the cumulative effect over days or even weeks triggers a crash.

 

[FMMM1]

In a perverse way I think this is beneficial in the longer term, because once someone in Garner's position comes flat out slamming NICE like this, and relying on trashy opinion pieces to back up what he is saying, it demonstrates so very clearly to NICE what pwME have been up against for decades. Makes it very clear just who the real abusers of good science are. Spewing this infantile abuse at NICE will, in due course I'm sure, come back at them as sure as if they were vomiting into the wind; the whole BPS bunch hopefully getting their fair dose of the splashback.

Does make you wonder how Cochrane feel about one of their Co-ordinating Editors hammering into NICE so insultingly, unprofessionally and unscientifically, given their intent to merge. Maybe they should consider giving him the push.

NICE may well be wondering what they've got into* if Paul Garner is criticising them.

*"-----This is a high level agreement [NICE/Cochrane], and NICE is in the process of working with Cochrane in an attempt to align processes and methods in the future, and this will take time."
[https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-86#post-395616]

 

[Jonathan Edwards]

That would seem to be the implication, but couldn't they also say they're doing it to retrain body parts rather than because of deconditioning?

Retraining body parts is overcoming deconditioning as far as I am concerned.
And it is not an evidence based treatment so has no legitimacy.

 

[Jonathan Edwards]

I'm with Sarah on this. The RCPCH commentary doesn't say much, but I don't think what they do say is wrong. The guidelines do suggest physical activity may help increase physical ability.

I think it is wrong because it is taken out of the context of specifically limiting it to people who are wanting to do more and feel able to. I absolutely agree with Trish that it would have been better not to have any of this in the guideline but there were (some) reasons for accepting it was a necessary compromise. Without the caveat of the broader guideline text you slip back into GET by another name. It may not be technically wrong but it is wide open to misuse.

And if this is, as they claim, what they have been doing for years anyway, we know it is problematic.

 

[Barry]

The guidelines really don't go very far in limiting exercise therapy. As @Keela Too says, the main (and very important) safeguard gained in the guideline is that requirement that the person stays within their energy limits. Hopefully that will prevent people being pushed into repeated PEM. That is the key point we need to try to ensure clinicians understand.

Yes, I think it will take a bit of doing to get this message across, but the information definitely is there in the guideline:

It is not just fixed incremental exercise therapy that is excluded; it is any exercise therapy that takes a person outside of their energy limits. That would apply to any sort of increment, be it flexible or fixed. Particularly note the "up or down as needed" condition, clearly stating that exercise must be reduced if necessary in order to stay within energy limits.

Bullet point 4 in 1.11.13, together with bullet point 3 (both halves of it) in 1.11.14, are probably some of the most important parts of the whole guideline. Once it is read and understood, it is pretty clear cut. A possible loophole some detractors might seek to exploit, is what is actually meant by a person's "energy limit". But this is also pretty well defined in the guideline:

 

[dave30th]

And it is not an evidence based treatment so has no legitimacy.

This is certainly true. I was trying to interpret it in the way they might be viewing it.

 

[Hutan]

It may not be technically wrong but it is wide open to misuse.

Yes, of course there's a difference between factually and ethically wrong. I was talking about the former, as in, 'does it say what the guideline says?'.

I think it is wrong because it is taken out of the context of specifically limiting it to people who are wanting to do more and feel able to.

The RCPCH guidance copies items 1.11.10 to 1.11.13 including

Only consider a personalised physical activity or exercise programme for people with ME/CFS who:

• feel ready to progress their physical activity beyond their current activities of daily living or
• would like to incorporate physical activity or exercise into managing their ME/CFS.

The RCPCH guidance also says:

An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13.

So, they are clear that only people who choose a physical activity programme should be given it. That's progress, butI don't think that requirement presents much of a limitation in relation to most newly diagnosed people. There's nothing in the guideline that limits therapists from talking in general but mostly positive terms about the use of physical activity programmes to the person with ME/CFS, and then only considering it for the person if they seem interested (as that would tick the 'would like to incorporate physical activity into managing their ME/CFS' box). It's as weak as that.


Where I think the RCPCH inaccurately reports the NICE ME/CFS Guideline, both factually and ethically, is related to 1.11.14, which the RCPCH guidance does not reproduce (while reproducing 1.11.10 to 1.11.13):

1.11.14 graded exercise therapy (see box 4)

Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme that does not follow the approach in recommendation 1.11.13 graded exercise therapy (see box 4)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

So, it completely fails to mention that physical activity is not a cure for ME/CFS. It also fails to mention that programmes based on deconditioning and exercise avoidance theories shouldn't be offered.

 

[Jonathan Edwards]

Yes, of course there's a difference between factually and ethically wrong. I was talking about the former, as in, 'does it say what the guideline says?'.

The problem is that 'saying what it actually says' is a weasel.

Philosophers write whole books about 'what it actually says' but miss the point that what text means is always critically dependent on all sorts of other context. It comes under the discipline of pragmatics and there is no end to just how much meaning in language lies outside what the text actually says.

So, it completely fails to mention that physical activity is not a cure for ME/CFS. It also fails to mention that programmes based on deconditioning and exercise avoidance theories shouldn't be offered.

And without that the meaning that will be conveyed will be quite different.

To me it is not so much an issue of ethics. It is an issue of what in practice will be conveyed to the intended audience. What will be conveyed, is 'it's OK chums we have been doing it right anyway and don't get too worried about this silly change of wording'.

 

[adambeyoncelowe]

....but Peter is a paediatrician and expect he is a member of the RCPCH?

And I'm sure he has already made his views known. Peter knows this stuff inside and out.

 

[Barry]

This next quote looks like a clear intent to circumvent the intent of the guideline. It also tacitly, yet inevitably, says that clinics have been using variants of GET for which no clinical trials have been done, and therefore no valid evidence, other than "clinical experience", which in isolation is a woefully inadequate evidence threshold for safety and efficacy. And more to the point, it strongly suggests a clear intent to persevere with this by some means, under the cover of discussing with patients, parents and/or carers. They need to fully clarify what treatments they propose to use, and what their evidence base is that is allowing them to legally do this.

Finally, NICE has acknowledged the disparity in which the definition of Graded Exercise Therapy is understood. We anticipate that this will be fully discussed between clinicians and patients (and their parents or carers) in respect of previous, existing or proposed therapy as these important specialised services continue to be developed.

Unfortunately this next bit is a classic example of telling the truth but not the whole truth, and is why in a court of law you are required to tell the truth, the whole truth and nothing but the truth - partial truths can strongly imply untruths.

An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13.

1.11.10 Only consider a personalised physical activity or exercise programme for people with ME/CFS who:

• feel ready to progress their physical activity beyond their current activities of daily living or
• would like to incorporate physical activity or exercise into managing their ME/CFS.

1.11.11 Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful.

1.11.12 If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team.

1.11.13 If a person with ME/CFS takes up the offer of a personalised physical activity or exercise programme, agree a programme with them that involves the following and review it regularly:

• establishing their physical activity baseline at a level that does not worsen their symptoms
• initially reducing physical activity to be below their baseline level
• maintaining this successfully for a period of time before attempting to increase it
• making flexible adjustments to their physical activity (up or down as needed) to help them gradually improve their physical abilities while staying within their energy limits
• recognising a flare-up or relapse early and outlining how to manage it.

But the exercise recommendations in the guideline also include the very important section 1.11.14, but the RCPCH seem to have unfortunately overlooked it. That section states:

1.11.14 Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

[my bold]

For a RC to blatantly mislead by omitting a crucial part of the truth, is indefensible, when saying "An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13", when it is abundantly clear that section 1.11.14 is also an inseparable component of what the guideline describes, yet does not fit with the narrative that the RCPCH is determined to portray. They cannot legitimately argue that 1.11.14 is irrelevant (especially given it has a crucial cross-reference to section 1.11.13 in it!); the reason it is there is because it is highly relevant, precisely to prevent this sort of word-play shape-shifting chicanery. So why else would they seek to airbrush this section out of the guidance on exercise therapy, other than because it undermines the circumventing of the guideline they seek to promote.

These folk are so blatant in their cheap trickery.