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

[Andy]

"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We have repeatedly called for GET to be withdrawn as a recommendation by NICE, have supported research that has found clinical trial evidence to be defective, and we have supported the publication of patient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/

 

[Trish]

Hmm. Overall OKish but I have some misgivings. To me it underplays the limitations of people with severe and very severe ME and overplays the possibility of 'exercise', and makes some statements not supported by evidence.

I'll be interested in what others think. I'll try to come back to it later and comment in more detail.

 

[Jonathan Edwards]

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.

 

[Sarah]

It seems to me a pity to emphasise the inflexible and regimented aspects. The evidence tells us nothing about that.

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.

Pacing or activity management takes account of an individual’s current abilities and when practised correctly, allows them to function inside of their ‘energy envelope’ while the body heals enabling symptoms to be managed.

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

Understanding the principles of PEM can allow more activity and less need to rest as an individual’s ‘energy envelope’ expands.

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

With both conditions, health professionals need to be aware that people who have been unable to lead active lifestyles because of illness and who are still disabled, should not be coerced into suddenly adopting potentially harmful exercise regimens that fail to take into account likely risk factors.

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.

 

[Trish]

Crossposted with @Sarah. I agree with the points made.
________

I agree that the emphasis on only being against inflexible programs is unevidenced and wrong.

I also think the opening sentence of the GET section:

The ME Association is not and never has been against exercise per se.

sets the tone wrongly, sounds defensive - as if we can only criticise GET if we provide some other type of exercise program that would be acceptable. It seems to imply that 'exercise' does have its place in 'treatment'. There is no evidence for this. I don't understand why, in a section on GET, the MEA would be mounting a defence of exercise having a place in ME/CFS treatment. There is NO evidence for this.

Reading it reminded me very much of the new draft NICE guideline, in that it means well and is heading in the right direction, but makes some of the mistakes we pointed out in our submission to the guideline review.

Take these paragraphs:
The ME Association article says:

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.
[...]
For some people, depending on their current state of health and functional ability, exercise can be carefully introduced as part of activity management or pacing, so long as the individual can accommodate an increase in physical activity and it does not lead to an exacerbation or relapse of ME/CFS symptoms.

Draft NICE guideline says on page 27:

Physical activity
1.11.15 Do not advise people with ME/CFS to undertake unstructured exercise that is not part of a supervised programme, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.

1.11.16 Do not offer people with ME/CFS:
• any therapy based on physical activity or exercise as a treatment
or cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy
• structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS
• therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process).

1.11.17 Only consider a physical activity programme for people with ME/CFS who are ready to progress their physical activity beyond their current activities of daily living, or would like to incorporate physical activity into the management of their ME/CFS.

1.11.18 A physical activity programme, if offered, should only be delivered or overseen by a physiotherapist or occupational therapist with training and expertise in ME/CFS.

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

1.11.20 If a physical activity programme is agreed with the person with ME/CFS, it should be personalised and should:
• establish their physical activity baseline at a level that does not worsen their symptoms
• start by reducing the person’s activity to within their energy envelope 2• be possible to maintain it successfully before attempting to increase 29 physical ability
• use flexible increments for people who want to focus on improving their physical abilities while remaining within their energy envelope
• recognise a flare or relapse early and outline how to manage it (see 4 recommendations 1.11.21 and 1.11.22)
• incorporate regular reviews.

https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline

The S4ME submission includes this:

Physical activity programmes for those whose symptoms have improved, and CBT for psychological support, are neither evidence based, nor necessary. We recommend they be removed from the guideline, where their inclusion presents a real risk of harm, with GET and directive CBT continuing to be provided under different names.

https://www.s4me.info/threads/scien...consultation-december-2020.18281/#post-311598

and S4ME said this:

There is likewise no reliable evidence to support the recommendations for physical activity programmes for some people with ME/CFS, or to suggest that increasing by flexible increments while remaining within a person's 'energy envelope' is feasible as a concept, has benefits (as suggested at 1.11.19) or is safe. The recommendations in the subsection on 'Physical activity' present a form of graded exercise therapy, for which the evidence review established, there is no reliable evidence. The portrayal in the guideline of activity programmes involving fixed increments as being poorly evidence and potentially harmful, and programmes involving flexible increments as acceptable and potentially beneficial is a false distinction, since it is clear that clinical studies of GET included in the effectiveness review did include non-fixed increments.

There is no reliable evidence that people with ME/CFS who find their energy levels have improved would benefit from input from HCPs, with the possible exception of those transitioning from being bedbound to greater levels of mobility, for whom the recommendations under physical maintenance may be helpful alongside general advice and supervision from a physiotherapist with up-to-date ME/CFS training consistent with this guideline. Our members generally report being able to increase activity levels naturally without need of HCP input when they have experienced improvements in health. Such a 'hands-off' approach has the benefit of entailing no cost to the health system.

https://www.s4me.info/threads/scien...consultation-december-2020.18281/#post-311625
as part of our general comments on the whole guideline, as well as detailed criticisms and suggestions for a rewrite of the Physical activity management section:
https://www.s4me.info/threads/scien...consultation-december-2020.18281/#post-311610

Taking couple more paragraphs:
The MEA said:

The ME Association has not encountered anyone with ME/CFS who has not tried to push against their limits from time to time, when they think they can, or when circumstances allow or dictate. However, exercise is not a panacea or proven means of recovery. Indeed, exercise is contra-indicated for many who are still struggling to achieve basic daily functions.

Cautious trial and error can be a way of learning we can do more – or that we should be sticking where we are, or even doing less. It is natural to try and push and to fight to get back to work or education as part of our efforts to return to ‘normal’ life especially while we are wrestling with acceptance.

Nobody wants to remain housebound or bedbound or limited by ill-health and having to depend on the support of others. This isn’t about a lack of positive mental attitude or avoidance based on fear. It is about realistic expectations and trying to prevent further harm.

People with ME/CFS and Long Covid will often learn the hard way about how much they can endure at any particular time and the rest they need to compensate. Health professionals should listen to their patients, learn from their experiences, and tailor management to be realistic to that person’s abilities. They should be flexible in their approach and should not apply the same approach to everyone or believe that continued disability is a result of deconditioning and that exercise is the answer.

I appreciate the emphasis that it is not a psychological fear of activity that is holding us back, and that we naturally try pushing to see if we can do a bit more. I'm not keen on the phrase 'how much they can endure' as that has psychological overtones. As in 'are you mentally tough enough'.

I don't like the 'individually tailored' approach by professionals angle. It sounds too much like the therapists who claim to be able to design individualised therapies for pwME. There is no evidence for this.

In our NICE submission we recommended the whole management section be geared around the concept of patient-led symptom-contingent pacing. So the professional's input is in helping patients understand that concept and strategies for implementing it for themselves, not for the therapist to be designing the activity program, whether individualised or not. And certainly not for the therapist offering physical activity programs of any sort even if patients' are going through a stable or improved phase in their symptoms. Sticking with symptom-contingent pacing allows for natural increases when symptoms allow, without the need for therapist led programs.

The MEA said:

With appropriate convalescence and careful management, it is possible for an individual to experience more stability in symptom severity and fluctuations. They might even show signs of improved functional ability allowing greater – if still limited – freedoms.

Understanding the principles of PEM can allow more activity and less need to rest as an individual’s ‘energy envelope’ expands. But health professionals need to recognise that this is not true of everyone’s experience.

For many with ME/CFS, increasing the ability to carry out daily activities such as dressing, improving personal hygiene, preparing meals, and becoming more independent etc. will be necessary priorities before any other activity is even contemplated.

If an individual no longer has PEM then they should review their ME/CFS diagnosis with a doctor. It is not clear of the extent to which PEM is a key component of Long Covid, although from the feedback we have received it would seem to be part of the symptom presentation for a lot of people.

I think this is OK in the context of people with early stages of ME/CFS and/or PVFS or long covid. It is true that many people recover from PVFS and probably from long Covid, so it's fine to suggest and improving and possible recovery pattern in those early stages. But I would prefer that context to be spelled out more clearly, so the likes of Paul Garner whose relatively short phase of a few months of PEM went away after careful pacing and rest, and he no longer fitted the ME/CFS definition, that diagnosis can be removed without attributing the recovery to whatever therapy they tried as they were starting to get better anyway.

But for those of us who have had ME/CFS for many years, this paragraph seems to place too much emphasis on a recovery phase following a period of convalescence and pacing.

Understanding the principles of PEM can allow more activity and less need to rest as an individual’s ‘energy envelope’ expands. But health professionals need to recognise that this is not true of everyone’s experience.

It sounds too much like the GET manual that gets people to 'find their baseline' and then start increasing activity. I don't think it's enough to say that it's not true for everyone. That too easily leaves us blaming ourselves for not trying hard enough to get pacing right - making it our fault if we fail to reach that lovely path to improvement.

@Russell Fleming, I appreciate the effort and intention of this article, but I am very concerned that it's approach to recommending therapist led individualised programs that include flexible increases in activity and exercise programs is not based on any scientific evidence. Why not focus instead on the fact that there is NO evidence that any sort of exercise has been shown to improve or lead to recovery in ME/CFS, nor that there is any place for the provision of such by the NHS.

I think the emphasis needs to sit firmly with convalescence, and symptom contingent pacing, with any increases in activity being solely determined on the basis of trying to avoid worsening by causing PEM and longer term setbacks. Exercise comes naturally if and when people are lucky enough to improve significantly or recover, not as part of a treatment regime.

I also think it would be worth spelling out in a document that is intended to cover long term ME/CFS, short term PVFS and long Covid that may or may not develop into long term ME/CFS, that many people with PVFS recover naturally without treatment, and that the same is likely to be true for longCovid, so to be wary of claims that any particular approach 'cured' any individual who was likely recovering anyway.

 

[Sasha]

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 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.

 

[Sarah]

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.

p.28 lines 6-7: Suggest replace with: ‘any programme that has increasing activity or exercise as its objective, regardless of whether this is by fixed or flexible increments, for example graded exercise therapy.’

By specifying that programmes based on fixed incremental increases should not be offered, any programme based on flexible increases would remain acceptable under the guideline. E.g. Programmes with scheduled increases except when PEM is present may be viewed as incorporating flexible increments and therefore guideline compliant, yet may do significant harm.

There is no standard definition of GET (Evidence Review G, p.335 lines 8-10), and therefore no requirement that increases in GET programmes must be by fixed increments. It can be seen from Evidence Review H that, in fact, studies of GET included in the evidence review did include flexible increments. It is therefore clear that the portrayal of programmes involving fixed increments as poorly evidenced and potentially harmful and programmes involving flexible increments as of potential benefit is a false distinction; studies of GET programmes have been assessed as low or very low quality evidence regardless of whether they involve fixed or flexible increments, with inconsistency of findings across outcome measures (Evidence Review G pp.137-165, 334-335).

We provide excerpts from study summaries in Evidence Review H, illustrating increasing by non-fixed increments:

Broadbent (2016), pp.34-35:
‘Exercise sessions were progressed by increasing the duration of the session only as tolerated for each participant. The workload was not increased until participants had achieved three consecutive exercise sessions of 30 min in total with no increase in symptoms, and the increase was 10% of the current workload. If participants reported any increase in fatigue or other symptoms during post-exercise, the exercise intensity was reduced until participants felt able to manage progression.’

Clark (2017), pp.92-93:
‘If symptoms increased after an incremental change in activity, participants were advised to maintain activity at the same level until symptoms had settled, before considering another incremental increase.’

Wallman (2004), pp.230-231:
‘Subjects were instructed to exercise every second day unless they had a relapse. If this occurred or if symptoms became worse, the next exercise session was shortened or cancelled and subsequent sessions were reduced to a length that subjects felt was manageable (pacing)’

Descriptions of other GET study interventions included in the evidence review also indicated that increasing was not by fixed increment (Fulcher, 1997; Wearden, 1998; White, 2011). Further, Evidence Review G acknowledges the heterogeneity of interventions described in GET studies (p.335, lines 9-10). Therefore, it is not sufficient to recommend that 'any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy' should not be offered to people with ME/CFS. To accurately reflect the evidence and adequately protect people with ME/CFS from harms, lines 6-7 should recommend that all programmes that have increasing activity or exercise as their objective, regardless of whether this is by fixed or flexible increments, should not be offered to people with ME/CFS. This includes but is not limited to GET.

1.11.20:

p.28 line 23:
Recommendation 1.11.20 describes a form of graded exercise therapy and has no place in the guideline. It illustrates why it is not possible to recommend activity programmes without inadvertently sanctioning harmful activity programmes. The guidance to start by reducing activity and to ‘use flexible increments for people who want to focus on improving their physical activities while remaining within their energy envelope’ is not sufficient to distinguish this from harmful activity programmes for which there is no reliable evidence of effectiveness, including GET.

There is no standard definition of GET (Evidence Review G, p.335 lines 8-10), and therefore no requirement that increases in GET programmes must be by fixed increments. It can be seen from Evidence Review H that, in fact, studies of GET included in the evidence review did include flexible increments (Broadbent, 2016; Clark, 2017; Fulcher, 1997; Wallman, 2004; Wearden, 1998; White, 2011). It is therefore evident that the portrayal of programmes involving fixed increments as poorly evidenced and potentially harmful and programmes involving flexible increments as potentially helpful is a false distinction; studies of GET programmes have been assessed as low or very low quality evidence regardless of whether they involve fixed or flexible increments, with inconsistency of findings across outcome measures (Evidence Review G pp.137-165, 334-335).

Therefore, it is not sufficient to recommend that 'any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy' should not be offered to people with ME/CFS. To accurately reflect the evidence and adequately protect people with ME/CFS from harms, physical activity programmes should not be recommended in this guideline, irrespective of whether they involve increasing by fixed or flexible increments.

 

[Ariel]

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.

 

[DokaGirl]

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.

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?

 

[Esther12]

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.

 

[Jonathan Edwards]

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.

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.

 

[Esther12]

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.

 

[FMMM1]

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.

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.

 

[Hutan]

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.

Maybe it's difficult, but the fact that there is little real information to give to patients must not be hidden. Just as eager clinicians offering all sorts of woo can distract their ME/CFS patients from feeling disgruntled, so can patient organisations. And we need to feel disgruntled, in order to demand change.

A few minor points to add to the good ones already made:

The same is true of Long Covid – although people with this condition and the health professionals who treat them also need to be aware of any potential organ damage relating to the initiating Covid-19 infection that would require additional medical care.

Anyone who has had an infection trigger their ME/CFS might also have potential organ damage. I expect some of those who developed ME/CFS after Ebola or SARS or MERS had some detectable tissue damage. Surely anyone turning up in their GP's clinic struggling with fatigue and cognitive problems and pain and all the rest, even those who have had a seemingly gradual onset, deserve to have a good amount of investigation to rule out organ damage? I don't think it's a good idea for the MEA to be suggesting that Long Covid requires a higher level of clinical attention.

Exercise comes in many forms, and while it is not a realistic goal for many with ME/CFS – and we are against any form of strenuous aerobic exercise – gentle exercise in the form of short walks outside, gentle swimming, short cycle rides or yoga can be beneficial when people are showing definite signs of improvement, or as an aid to increasing fitness.

We don't know that walking, swimming , cycling or yoga are the best forms of exercise for people with ME/CFS. It might be that a very brief burst of aerobic exercise is tolerated better and gives better fitness benefits - we don't know. A person who has been a keen weightlifter before becoming ill might get personal satisfaction from using some of their limited activity capability to maintain muscle tone. Conversely, a yoga session might be utterly exhausting and dangerous for people with orthostatic intolerance and poor balance. Members have often commented how difficult all of the necessary tasks before and after the time in the water doing 'gentle swimming' are - the effort of getting to the pool, getting changed, dealing with the temperature changes....

There is no mention of exercise for people who are bed bound - and yet this is the group that I think is most likely to need professional assistance, to avoid serious health issues arising from immobility. Things like assisted movement of limbs to retain range of movement and strategies to avoid thrombosis and bed sores.

 

[Sly Saint]

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.

 

[Peter T]

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.

 

[Mij]

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.

 

[lunarainbows]

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."

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.

 

[Blueskytoo]

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.

 

[Hutan]

@Russell Fleming, I think there are important points in this thread. Could the MEA please urgently review its statement on exercise, particularly noting that there is no evidence that exercise, not even flexible, gentle exercise, cures or improves ME/CFS?