Review A Scoping Review of Pacing for Management of [ME/CFS]: Lessons Learned for the Long COVID Pandemic, 2023, Sanal-Hayes et al

Abstract
Background: Controversy over treatment for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a barrier to appropriate treatment. Energy management or pacing is a prominent coping strategy for people with ME/CFS that involves regulating activity to avoid post exertional malaise (PEM), the worsening of symptoms after an activity. Until now, characteristics of pacing, and the effects on patients’ symptoms had not been systematically reviewed. This is problematic as the most common approach to pacing, pacing prescription, and the pooled efficacy of pacing was unknown. Collating evidence may help advise those suffering with similar symptoms, including long COVID, as practitioners would be better informed on methodological approaches to adopt, pacing implementation, and expected outcomes.

Objectives: In this scoping review of the literature, we aggregated type of, and outcomes of, pacing in people with ME/CFS.

Eligibility criteria: Original investigations concerning pacing were considered in participants with ME/CFS. Sources of evidence: Six electronic databases (PubMed, Scholar, ScienceDirect, Scopus, Web of Science and the Cochrane Central Register of Controlled Trials [CENTRAL]) were searched; and websites MEPedia, Action for ME, and ME Action were also searched for grey literature.

Methods: A scoping review was conducted. Review selection and characterisation was performed by two independent reviewers using pretested forms.

Results: Authors reviewed 177 titles and abstracts, resulting in included 17 studies: three randomised control trials (RCTs); one uncontrolled trial; one interventional case series; one retrospective observational study; two prospective observational studies; four cross-sectional observational studies; and five cross-sectional analytical studies. Studies included variable designs, durations, and outcome measures. In terms of pacing administration, studies used educational sessions and diaries for activity monitoring. Eleven studies reported benefits of pacing, four studies reported no effect, and two studies reported a detrimental effect in comparison to the control group.

Conclusions: Highly variable study designs and outcome measures, allied to poor to fair methodological quality resulted in heterogenous findings and highlights the requirement for more research examining pacing. Looking to the long COVID pandemic, future studies should be RCTs utilising objectively quantified digitised pacing, over a longer duration of examination, using the core outcome set for patient reported outcome measures.

https://www.medrxiv.org/content/10.1101/2023.08.10.23293935v1

Edit: Published 14th October 2023
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04587-5
The published version of the abstract is in post #16

 

Authors of this preprint include members of Physios for ME and Long Covid Scotland.

 

I don't agree with that. There is no need to test pacing. It's not a treatment, or an intervention. There is no right way to pace, and it would take resources away from things that could be useful. Although of course if they come from a pool of funding for "non-pharmaceutical interventions" the benefit would actually be in taking away resources from the usual useless nonsense. But there is far too much individual variation anyway, there would never been any good data for this. It would remain uncertain forever, no matter how many studies are done.

This makes as much sense as trying to figure out a right way to deal with severe poverty. It's a systemic issue that requires a systemic approach. Pacing has been "figured out" as much as it possibly could, and people who do not experience PEM are not the right people to teach this to anyone. Ever. Even with good intentions. Physios4ME understand it well enough, but the first-line therapists who would deliver the bulk of it won't.

It's akin to convalescence. Most of the implications are not clinical, as it's not possible for someone to pace when they have to keep a job that makes it impossible, or don't have support at home because their MD keeps saying there's nothing wrong with them and to deal with their anxiety/depression/whatever. All those are blocked by medicine's stubborn dogma over insisting that there is no such thing as PEM, simply because they can't be handed out an explanation of the biology from an eminent source they don't reflexively dismiss.

This is a lot like dealing with chronic hunger. If you go back to the Great Depression, there is so much about it. Tips to "feel full", to stretch insufficient food, to make clothes that hide how thin they are, etc. We did not solve this problem any other way than by making malnutrition a thing of the past, at least for those of us fortunate to live in rich countries. It got solved by systemic solutions to grow prosperity, the middle class and the food supply. There are no individual solutions to stretch 500-900 calories per day that don't involve making food available to people at prices they can afford and with the equipment and energy they need to cook the needed 2K-2.5K calories people need per day.

Of course there is the problem that clinicians need to know that pacing is the right way to approach this, but I don't think that clinical trials matter here. They will always be interpreted in the worst possible way, most likely with the "well, pacing works so no need to do anything more or spend any additional resources on this" if it comes to that. We are dealing with a very irrational system that wants to distort everything happening to us simply because it's an immovable tradition now. It has to be approached differently, and for sure it's not so-called evidence-based medicine that will accomplish any of this. EBM is not a viable methodology, as far as I'm concerned. It produces nothing of value.

 

Not looked at the article yet, but any thing that risks patients or clinicians seeing ‘pacing’ as a treatment rather than a way to try to avoid PEM and deterioration in ME is dangerous.

It may possibly be that good pacing can create better conditions for some degree of spontaneous improvement which for most is likely to be limited but seeing it as a treatment takes us into the realm of ‘pacing up’ which is GET in disguise. Pacing up like GET sets the patient up for future deterioration.

For many/most successful pacing may only be possible by reducing activity, but this can only be achieved long term by increased levels of support. Research or short term intervention may create circumstances where participants can reduce their overall activity in the short term, but in the long term life intervenes unless there is appropriate support.

It is worth asking what could be the outcomes of successful pacing. I suspect we should be looking at more stable activity levels and reduction in episodes of or time spent in PEM. Also it might be hoped that we would see a reduction in levels of negative symptoms associated with PEM, such as headaches, insomnia, pain levels, but often such symptoms are patient specific, so research would need to look at individual experiences making group studies problematic. Things like hours worked, benefits claimed or overall activity levels are not necessarily helpful outcome measures, as for many reduced activity levels or changes in what the individual attempts to do might be necessary for to achieve successful pacing. Also for some, particularly the more severely impaired, even the basic activities of daily life such as going to the toilet, feeding or personal hygiene may still trigger PEM and so successful pacing in terms of avoiding PEM is unachievable.

 

What might be interesting is if you imagine your 3rd para as a description of the spectrum of 'natural environments' people actually live under - and there will be some who have lives where those around them/the situation is kinder to ME/PEM/'pacing' - that measures are found that can both 'quantify these' (how much over threshold people end up having to be, as described by body data/illness measures, rather than 'did x' - because everyone will have 'oopses', and some continual over-exertions we don't know we are doing etc), and map them to the longer term e.g. 3yrs follow-up. What I mean is them measuring HR (I know it isn't an ideal measure I'm using it as an example that 'steps' needs to become 'exertion measure relative to individual's threshold) and then function as describe by whether people are stuck horizontal more etc. short term and then slowly reducing in functions like 'whole package of capabilities in a month' inc shopping, adjusted movements, social life, being able to watch tv/read less and so on that they mightn't notice is a slow creep over 3yrs.

It could provide a good way of side-stepping the fact that even those who have ME for many years can be thinking they are 'managing well' because they are walking the line in keeping their job by sleeping every hour outside of it but are really 'at threshold' in a way that feels like success subjectively to onself short--medium term but results in slow decline over those longer terms. And it is those objective measures that will help show that - because you don't notice yourself having to adapt and become more tenacious e.g. with now never going to the supermarket, rather than just the odd online shop, and only realising when you think about when you actually last made a coffee with a friend/dentist appt/haircut that it has actually been a year etc.

If there are any digital measures that can help to triangulate the 'work done' angle which is arbitrary when we think that doesn't cover cognitive and the wired tired etc and therefore mightn't be as simple patterns on its own without indicators that show 'in relation to someone's individual threshold' and whether someone who is doing a routine of do and then have catch up rest that seems to be working for some and so on.

I am wary of anything that is going to be focused on the paternalistic 'putting everyone into groups where their routine is dictated as a stick to beat them' - which is basically what has been done to us at best for years. But this is - if using the 'digital' in the right way, measuring the 'exertion' and hopefully the time-pattern so the cart before horse starts being removed and some of the patterns we all know occur can be shown and unpicked.

True there will be some arrogant-ignorants who will twist anything - like where someone is getting overworked their suggestion is if the measure is heart rate that person just needs to learn how to moderate their heart rate so it looks like a norm at a spa whilst they are slogging 3 jobs at a time - and I'm a fan of the recent research which worked with Bateman Horne and used time horizontal/how horizontal as much as steps, because I think the 'illness' stuff of PEM being you might operate like a fit person then collapse needs to be being incorporate, just as those who are more severe also need measures that will apply to them (and when I'm in PEM I'm in leg pain and go to the loo a lot, but also can't sit up for any time length).

So I worry about how things are done and distorted but do know that - if it is unusual at all, rather than it just being people with other serious illnesses don't feel the need for them to argue with nonsense research suggesting hey just think different and try harder with their illness because those who employ or love them aren't about to force it on them like a good idea because it is obvious bigotry - for some reason noone will get rid of the gravy train parasitic industry and so we've ended up having this huge useless dump of supply-without-demands onto us because sure as heck noone wants to let it near the rest. And people are really terrible where instead of shutting it down as terrible for everyone and shouldn't be leeching funds, they just go for the making it not their problem so as long it is another disease.

 

Have only read the abstract. It makes it very clear just how poor the current data on Pacing is. I think it's helpful to have this so clearly put on record, especially in the context of PACE-style "pacing" being touted by the usual suspects as evidence that pacing as patients actually practice it supposedly doesn't work.

How to study pacing in a way that generates some useful data is separate question and one we've discussed in various other threads over the years. No easy answers

 

Technically, it should be comparable to the depth of evidence for avoiding smoke and other types of bad air while asthmatic. That is: very little.

It's just that it's not actually possible to avoid exertion, and the evidence is completely misunderstood. As is the context. And the lived experience of patients. And the outcomes. And literally everything else about the illness, or about PEM.

It's a great example of how a little knowledge can be very dangerous. And knowledge in medicine about PEM truly reaches a quantum level: it is the smallest scale allowed by the universe.

 

Agreed. Pacing is akin a skit my dad did to poke fun at doctors:
Patient: "Doctor, it hurts when I raise my arm"
Doctor: "Then just don't do that!"

Pacing needs to be universally understood as a coping/management/palliative technique. It's not a treatment. It doesn't make us better and doesn't try. It's like avoiding smoke if you have asthma like you said, or not moving your arm if it hurts. What we really want is the ability to perform our desired activities without getting PEM.

 

Still haven't read the paper but this info makes me think some of the criticism in this thread, however valid in general, may be misplaced when applied to this particular case:

It is true that in an ideal world we would be throwing most of our resources at finding the cause of ME and LC, and finding effective treatments or a cure. We wouldn't be faffing about studying pacing. Alas, ideal this world ain't

And there are aspects related to pacing that should have been studied properly years ago. For example, does it make a difference to the chance of recovery if a person can convalesce - really a form of pacing - properly in the early stages? During later stages, do people who can pace more deteriorate less overall? Or is that just luck, and pacing just makes you feel a little less horrible in the process?

Good studies into different pacing techniques could potentially have led to pacing being recommended instead of GET much earlier, and pacing advice to newly diagnosed patients might have been better, saving them at least some amount of trial and error.

Good pacing studies could even have given some hints about pathophysiology.

 

Couldn't agree more. It is a sign of the ME/CFS research field 'growing up' when important topics such as pacing start being properly recorded and investigated, and this is an example of part of that process. We need evidence of lack of evidence where it is appropriate, which will never be as exciting and sexy as investigating the latest theory on a biomarker or a cure, but is part of a hugely important yet underappreciated effort.

 

Oh, studies and reviews are OK. My disagreement was specifically over clinical trials. There is not only no need for clinical trials, they are actively harmful when it comes to us. Because most of them will be run by people who have a distorted perception of what PEM is, will be heavily biased in favor of finding everything they set up to "find". Or even are heavily conflicted with personal/financial gain in mind, if only simply because it's already what they're doing and they can't believe they could be wrong about it.

By all means we need to know a lot more. We need studies. We need data. We need reviews of those studies. But evidence-based medicine through pragmatic clinical intervention trials is not the way to move us forward, it explicitly keeps us backward. Even a good clinical trial would simply be "balanced" by dozens more with varying ideas. It's a fully interpreted methodology, where changing the people changes the outcome entirely. In the end, it's "those few people said, vs thousands of others who insist otherwise". It's all politics, evidence is irrelevant to this process.

There are no techniques to pacing. There is no formula. It varies too much between individuals and circumstances. There is nothing that clinical intervention trials can do to provide a better understanding here anymore than there is a place for studies on how to live on $1 per day. It's not feasible, the underlying problem has to be either fixed, or compensated for. Usually with disability and community support, which is basically the one thing MDs agree should never happen for us.

It's just a natural reflex in modern healthcare to go to EBM and arbitrary clinical trials for everything, even uninterpretable ones. And IMO it is a completely worthless paradigm that should be ended with extreme prejudice.

More studies. More data. Enough with pragmatic trials.

 

published
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04587-5

 

This is connected to the Long COVID at UWS research group who led the scoping review. There may be another study in the works perhaps.