ME Association Statement on Exercise in ME/CFS and Long Covid, April 2021

"The ME Association decided to issue this position statement on exercise and activity management in ME/CFS (and Long Covid) in light of recent discussions which have appeared on, for example, BBC Newsnight, and in the Guardian newspaper and that are continuing online.
....
Graded Exercise Therapy
The ME Association is not and never has been against exercise per se. What we have consistently been saying since publication of the current NICE guideline (2007) and the PACE Trial (2011), is that use of regimented and inflexible graded exercise therapy as a management approach for people with ME/CFS is wrong, ineffective, and can cause harm.

We have repeatedly called for GET to be withdrawn as a recommendation by NICE, have supported research that has found clinical trial evidence to be defective, and we have supported the publication of patient survey evidence which has consistently shown how ineffective and harmful this method of treatment can be."

https://meassociation.org.uk/2021/04/me-association-statement-on-exercise-in-me-cfs-and-long-covid/

 

It seems to me a pity to emphasise the inflexible and regimented aspects. The evidence tells us nothing about that. It tells us that as far as we know exercise does not make ill people better - period. The known benefits of exercise are in keeping people well or restoring function following surgery, stroke or truama. In none of these cases is the exercise actually intended to make an illness better.

 

I agree. Perhaps MEA should look at the GET study descriptions in evidence review G, as a number of these include flexibility and increasing by non-fixed increments, which is pointed out in the S4ME submission to NICE.

There's no evidence for 'healing' of any sort using activity management or otherwise.

There was something similar in the draft guideline which implied that increasing while remaining within the energy envelope was feasible.

This isn't well-worded. No one with ME/CFS or Long Covid should be coerced into any sort of programme, and particularly not potentially harmful exercise programmes. High functioning patients still risk deterioration with inappropriate programmes/increasing.

There are some good statements but the overall impression I come away with is that activity management leads to stabilisation from which increasing may be possible. I don't think the caveats are sufficiently emphasised. It concerns me that this reflects the draft guideline in terms of promoting flexible increasing for those who feel this is possible with condemnation limited to inflexible or regimented increasing.

 

The MEA have always said 'one size doesn't fit all' in relation to GET, as though the issue was with not individualising the treatment. I really wish they'd drop that attitude. As you say, there's zero evidence that that's the issue, and plenty that it isn't.

 

A couple of further excerpts from the S4ME submission which address why inclusion of recommendations for physical activity programmes and the failure to make a recommendation against exercise programmes of non-fixed increments in the draft guideline are not supported by the NICE evidence reviews.

1.11.20:

 

I agree that this is a bad statement. Re: exercise "therapies", seems to give cover to BPS people who wish to operate around the new guidelines, whatever they will be. Not sure what else is being achieved.

 

Thank you for noting these, @Sarah
It concerns me when I see "healing", "expansion of envelope" etc., in guidance about ME. I am not being doom and gloom about the potential for pwME to improve. However, when info like this is given, I don't think it paints a realistic picture of the magnitude of ME. How severely it often affects people.It's still giving the impression that exercise will cure, or notably improve ME. (Very much agreed exercise in whatever form possible is highly important.)

ETA: I wish to thank MEA for their work in addressing this. Exercise as it pertains to ME is difficult to convey due to the hardened belief that exercise will improve all who partake. And, in our case cure. I echo @Trish about guided exercise. Why do we always need therapists?

 

The phrasing of things like this is always difficult, but I think it's good for the ME Association to be cautious and not fall in to the trap of seeming as if they're telling all patients with ME that they must not exercise. Some people try to portray patient groups like this and I think it's worth trying to guard against that misrepresentation.

I agree that the use of "regimented and inflexible" was probably unhelpful, and in other places they say more than I'd feel comfortable with, but considering the difficulties an ME patent group faces when discussing exercise I thought that this was still pretty decent.

 

But there is no need to fall in to that trap. It seems to me that they have fallen into the important trap - of giving credence to the 'escape clause' in the NICE draft that suggests that as long as GET is a bit wobbly it will do.

Nobody has to tell people not to exercise. They just need to be honest and stick to the evidence, which is that exercise does not make ill people better as far as we know so exercise is not a 'therapy' for ME. Exercise is being active for the sake of being active rather than for the sake of managing. And nothing suggests that for PWME that is helpful. Keeping up useful activities may be useful. If people are well enough to do more then they don't even need any treatment or advice. The MEA also seem to buy in to 'multidisciplinary teams' and rehab in general. It is a muddled and unhelpful message.

 

I can see that, and agree they went too far that way, but if they think the next big fight coming up is going to be about the dropping of GET because of bullying from unreasonable anti-exercise patients I can also understand that influencing their positioning. They may have insider info on NICE we're not aware of?

I think that MEA can be a bit too willing to give general 'advice' when we don't really have good evidence to base it on. At the same time, it's difficult for a patient organisation to not have any real information to share with patients - that could make them seem pointless.

IMO they've always been a natural 'Establishment' group that wants to be insiders and appeal to, and bend, those with power. For that role I think they do okay, though they were completely undermined for a decade+ by Action for ME being wilfully ignorant, incompetent and credulous. It's hard to get anyone to bargain with you when a major patient group is bending over backwards to give anyone with power exactly what they want.

 

The other thing is that if funding gets allocated to things that don't actually improve your health/well being then that looks like money that would be better spent elsewhere. E.g. Chris Ponting has been funded to do a GWAS study, something that may help to understand the underlying cause and how to address it --- more of that please.

Psychological approaches also, how much money gets pushed into that and it's beginning to look like the main beneficiary are those who get paid to do it.

Finally putting money into exercise, and psychological, approaches means that the Government can say look what we've done --- we've spent £X. I work at a junior level in (non-health) policy --- something must be done, this is something ----therefore --- we're addressing the problem!

So maybe these approaches aren't benign.

 

prevention of deterioration, not 'treatment' or 'rehabilitation' should be main priority until there is firm evidence that any 'treatment' works and those administering it know what they are doing.

 

It is possible that the right level of pacing sets up the right conditions for some people with ME to experience spontaneous improvement. We know that activity programmes of themselves do not cause improvement, but there is the possibility of the right activity management facilitating some spontaneous recovery and allowing people to make use of such improvement as it occurs.

However it is very difficult to prevent both clinicians and patients from getting carried away if such pacing/activity management is presented as a means of increasing activity and consequently then overstepping any current personal activity ceiling. As we have seen in the history of ME, health care professionals are often as irrational or even more irrational than patients in their pursuit the magic cure, and they struggle to accept we currently have no effective rehabilitation techniques.

Further such spontaneous improvement is only a possibility and we do not have any idea who might experience an ongoing improvement, who limited improvement within a fixed ceiling, who no improvement and who deterioration even if the absolute best conditions for spontaneous improvement are created. To present pacing/activity management as a possible means of facilitating improvement is likely to set most people up for failure.

My personal experience has been of varying degrees of relapses and remissions, with an overall downward trend in how much I am able to do. Subjectively it seems that enough rest and pacing allows recovery to happen, but that as I recover I tend to reorganise my life on the assumption that this recovery will be permanent. However eventually I get to a point where I am doing too much and relapse. It is impossible with our current knowledge to say whether I am then pushing against a pre existing activity ceiling or there has been some form of relapse in the underlying biomedical condition unrelated to my activity levels. In other words, I do not know if my relapses are self inflicted by becoming over ambitious or would have occurred whatever I did. What has taken me over twenty years to learn is that not planning for relapses makes my life much harder, and when they do occur backtracking on commitments can be costly financially and emotionally.

Any information on exercise for ME and/or Long Covid, needs be be worded very carefully to allow for the possibility of improvement, but to avoid setting up people for failure. It should be explicitly stated that not everyone will experience spontaneous improvement, indeed with ME most will not, that any improvement may be limited by a fixed ceiling and even then that relapse remains a distinct possibility.

 

I think the improvement would occur on its own without proper exercise or pacing?

The more I exercised over my limit, the worse my PEM became.

 

Sorry for bringing this thread up again but I bookmarked this to reply later as I feel this topic is important.

I am worried that Dr Charles Shepherd said this. I’m worried about 3 things.

He is still saying, that he is not against exercise per se, but that inflexible, graded exercise is harmful. The issue is that inflexible graded exercise probably isn’t even the therapy that’s used anymore. I’m sure even the BPS crew would be quick to say that’s not what helps ME these days. It’s not what I saw in the NHS clinic.

I’ve had many instances of flexible, non-graded exercise. that’s what most CFS recovery programmes, physios, chronic pain physios, even the trial I was on, did. Every single time it led to me becoming worse, and never becoming better from it. Each time I got caused more pain. Because each time, there was no way that I, or the others who were “treating” me, could possibly know what my energy and exertion and aerobic/anaerobic threshold was, or what exercise meant for my longer term health. There’s no way to quantify that currently with the tools we have.

You can very easily go over what you think your threshold is, with flexible exercise. By constantly “pushing” at the boundaries, by trying to increase a little and then increase a little more. I did that constantly. The pressure and gaslighting you put on yourself can be immense and again lead to worse health and inability to rest. Also it might seem like you are ok but it’s like a rolling snowball and you’ve gone over PEM or hit some threshold without knowing it.. and then some months later you can have a big relapse which you don’t recover from. We don’t even know what PEM is right now, so how can we quantify this either?

The second thing that worries me is that he says gentle exercise can be useful when people are showing definite signs of improvement or want to improve fitness. Is that true? there’s an undercurrent on increasing our exercise and rehabilitating. Is there evidence that actually helps? Or would it have been better for that person to, instead, do a less physical activity or rest more, even if they think they’re well enough to exercise or take a walk? would that help them and improve their prognosis in the longer term? Is it the same for everyone?

And then he mentions “while the body heals”. This seems to say we will heal for sure. So both these things are more in line with current ME clinics.

I think these kinds of statements need to be different, because this is just one step away from GET lite / rehabilitation etc, by only focusing on inflexible exercise and then mostly talking about increasing or doing exercise as long as we stay within the boundaries. I also don’t see why he needs to say they have “never been against exercise”. They instead need to say that exertion intolerance itself is a symptom of ME, this extends to exercise, and be honest and say we dont know what amount will harm short or long term as we don’t know how to properly measure energy thresholds yet. And this applies to flexible exercise too. It could say that as people get better they often do more. I would like to suggest that when charities talk about things, they always keep in mind severe and very severe ME, not just as a passing mention or an extra paragraph saying we can’t do much, but actually talking about what can and does happen and the extremely serious consequences - due to all types of exercise including flexible types and increasing exertion in general.

 

Exactly, @lunarainbows. There is just no way to know what’s going to make people worse as we don’t know what causes our illness(es) in the first place. Sweeping generalisations like this are dangerous, especially for those of us toward the severe to very severe end of the spectrum.