The relevance of pacing strategies in managing symptoms of post-COVID-19 syndrome 2023, Ghali et al

Abstract
Background
Post-COVID-19 syndrome (PCS) shares many features with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PCS represents a major health issue worldwide because it severely impacts patients’ work activities and their quality of life. In the absence of treatment for both conditions and given the beneficial effect of pacing strategies in ME/CFS, we conducted this study to assess the effectiveness of pacing in PCS patients.

Methods
We retrospectively included patients meeting the World Health Organization definition of PCS who attended the Internal Medicine Department of Angers University Hospital, France between June 2020 and June 2022, and were followed up until December 2022. Pacing strategies were systematically proposed for all patients. Their medical records were reviewed and data related to baseline and follow-up assessments were collected. This included epidemiological characteristics, COVID-19 symptoms and associated conditions, fatigue features, perceived health status, employment activity, and the degree of pacing adherence assessed by the engagement in pacing subscale (EPS). Recovery was defined as the ability to return to work, and improvement was regarded as the reduction of the number and severity of symptoms.

Results
A total of 86 patients were included and followed-up for a median time of 10 [6–13] months. Recovery and improvement rates were 33.7% and 23.3%, respectively. The EPS score was the only variable significantly associated with recovery on multivariate analysis (OR 40.43 [95% CI 6.22–262.6], p < 0.001). Patients who better adhered to pacing (high EPS scores) experienced significantly higher recovery and improvement rates (60–33.3% respectively) than those with low (5.5–5.5% respectively), or moderate (4.3–17.4% respectively) scores.

Conclusion
Our findings demonstrated that pacing is effective in the management of patients with PCS, and that high levels of adherence to pacing are associated with better outcomes.


The relevance of pacing strategies in managing symptoms of post-COVID-19 syndrome | Journal of Translational Medicine | Full Text (biomedcentral.com)

 

The description of pacing starts alright but then veers off into graded activity territory.

"They consist of adapting and adjusting the different patients’ activities in terms of physical, cognitive and emotional effort within the limits imposed by the illness [28]. Pacing is very similar to the energy envelope theory [29] or “staying within the envelope”, which not only seeks to avoid overexertion responsible for baseline symptom exacerbation and PEM occurrence, but also underexertion [24, 29]. Consequently, perceived energy levels will increase over time and fatigue levels decrease, allowing patients to progressively perform higher levels of physical and cognitive activities [29]. Pacing activities according to available energy resources helps prevent worsening of the disease [28] and improves patients’ quality of life [30] while preserving adequate activity levels."

 

@Andy I don't think so. Pacing allows doing more if capacity improves.

 

Of course pacing allows more IF capacity improves but that isn't what is claimed here.

"Consequently, perceived energy levels will increase over time and fatigue levels decrease, allowing patients to progressively perform higher levels of physical and cognitive activities."

 

Whether or not the treatment was real pacing the study is worthless so on a level playing field basis should be put in the trash can with the rest.

 

considering that the vast majority of people with post viral symptoms will recover within a three year time scale I agree with Jonathan Edwards that this and any other paper is worthless until they get serious about the natural recovery rates.

 

The study does seem to show that pacing improves outcomes, but can't tell us by how much due to various methodological weaknesses.

There also seems to be an issue with the adherence to pacing measure:

Maybe the people who are not improving believe "I'm not improving and this shows I've been doing a poor job at pacing" whereas the people who are improving believe this is evidence that they're doing pacing right. This kind of effect could be occurring to some degree.

The definition of recovery included the return to work which in my opinion is a lot less susceptible to distortion and bias than outcomes like self-reported fatigue.

 

Based on the abstract there seems to be the usual problem: people who are recovering - and for whom careful symptom-contingent pacing up may well be appropriate - are mixed up with people who are not recovering and who need to stick to pacing within their energy envelope. Cue confusion all round and results which are impossible to interpret.

Figuring out a way to reliably separate the two groups would be a worthwhile research project in itself. Step two could then be what this paper appears to have tried to do, i.e. work out if pacing well makes a difference, something we have very little research on.

Haven't read the paper yet, only searched for "engagement in pacing subscale (EPS)". Couldn't find it in the paper - did I miss it? - but one of the referenced papers has this "Activity Pacing and Risk of Overactivity Questionnaire". Seems to be a relatively new questionnaire and not developed for ME or Long Covid specifically

A. During the day I plan several moments to recover.

B. I perform my activities at a slow pace.

C. When performing my activities, I take my fatigue into account.

D. When I’m engaged in an activity, I find it difficult to stop timely.

E. I alternate intensive activities with less intensive activities.

F. I divide my activities over the day.

H. I find it hard to limit my activities.

From: Associations between activity pacing, fatigue, and physical activity in adults with multiple sclerosis: a cross sectional study (table A1)
https://www.mdpi.com/2411-5142/5/2/43

 

This paper is interesting because no one has tested pacing so soon after infection. We know it doesn't do much later on but it might work much better early on where there is still a good chance of recovery.

 

Having been handed out Dr Ghali’s leaflet on pacing when I consulted him, he is vehemently opposed to pushing through and “pacing up” if it is not feasible. He recommended strict pacing and rest, and that I avoid graded exercise therapy for both ME/CFS and POTS — which he criticized again in an interview on long Covid — so I would be surprised if he had done otherwise for any of his patients.

 

Nope, sorry, it shows nothing. Almost certainly the investigators were hoping for this sort of result and in a retrospective review it is always possible to get the result you want - at least something that looks a bit like it.

If supporters of PWME start using this sort of evidence then Sharpe and co are fully entitled to say 'Look who's talking'. The playing field must be level.

 

You'll recall discussion re long covid trial(?) in Scotland using actimetry - so presumably something along those lines.

EDIT - "Those taking part will be required to wear a sensor on their wrist, a bit like a watch but without a screen, which will measure their activity levels, posture and sleep. They will also be given movement sensors to keep in their home and an ECG patch to be worn during the first seven days of the study."
https://www.abdn.ac.uk/news/16714/
thread - https://www.s4me.info/threads/uk-ab...s-to-increase-understanding-of-fatigue.33400/

 

It's often used incorrect in psychosomatic theology, but here it would actually apply: there is a trend towards more recovery. In itself it isn't especially significant, and later relapses are too common to make this into a coherent treatment. It's far too punitive and counterintuitive to be rigorously adopted, and in most cases financial pressure and obligations make this completely impossible anyway. It's barely any different than IVIG and its, what.... $50K price tag? Sure, this can help, but who is going to pay for this massive expense?

If it has to be rigorously adhered to, should people choose to put their studies aside? Their career path? For how long? Who makes that determination? How long should the people this won't help recover continue strictly adhering to? There is no way to know, everyone is blind as to what the outcomes will be.

This study has precisely one very important feature: this is the opposite of the activation/gaslighting ideological model. On that it is useful. It's nuanced, so that makes it extra difficult to implement, we see how easily numbers that, at best, can be construed as 1/7 getting some limited benefit, that no one can even quantify, means that it's a cure. Evidence barely matters in evidence-based medicine, it's all politics.

But it supports the paradigm shift away from assuming that activity is what makes people recover, rather than activity being a marker of recovery, which happens alongside, or after, but cannot be a determinant. A level of activity that needs help in keeping the floor acceptable, rather than raising the ceiling.

However in essence, this doesn't need to be put into some program or whatever. This is convalescence. Medicine abandoned the idea of convalescence in favor of getting people moving as soon and as much as possible. However they ignore the "as possible" part, which is the significant thing here. It's not possible here, only good old convalescence actually helps, and only in pushing towards a trend.

And this is why the rehabilitation framing is problematic. Because it has the goal of activating people. And what patients need is the exact opposite. There is no need for coaching, or encouragement, or any of this, only basic support and that isn't medical, it's policy. And this model is very expensive, on top of having no impact on outcomes. Some programs involve weekly sessions for months, the costs of this 1:1 model are absurd and they only ever scale linearly, no economies of scale here.

So as a pragmatic trial aiming to put this into practice, hard no. Pacing is not a treatment, and never will be. Not anymore than avoiding smoke is a treatment for asthma. As a theoretical trial simply observing, hypothesizing and testing, absolutely. As every observation before showed. As the patients have said for decades. As the very few actual experts have known. As all the evidence has validated.

The emperor is naked. Now quickly put some clothes on that shame, its epidermis is showing.

 

I think what's frustrating is that you can measure outcomes objectively (actimetry - Fitbit type devices) --- so why not do that --- just doesn't give the right answers I guess, i.e. confirm your idea that pacing works ---
"Journal of Translational Medicine" - well there you go then this get translated into treatments! As if those unwell didn't have enough to contend with!

 

Tried to read beyond the abstract but my brain is refusing to remember from one paragraph to the next, making proper analysis too difficult.

Still, some of the figures seem odd, like the low prevalence of PEM and the relatively even initial distribution of PEM across all the groups whether they later recovered, improved or remained significantly ill. So reporting PEM early in the illness did not predict outcome (though there was a non-significant trend). I'm not sure how they assessed PEM.

The odd figures could very well just be a matter of the sort of retrospective reporting biases in a small cohort that can generate random findings. But it speaks to an important unresolved - because barely researched - question. Do overexertion or pacing, especially early in the illness, affect long-term outcomes or is the die already cast right at the start?

I'm making a distinction here between short-term effects of pacing versus overexertion and long-term outcomes.

We know a bit about short-term effects from the overwhelming amount of self-reports of symptom exacerbation following exertion, supported by a variety of provocation studies finding objective molecular changes as well as reductions in function following exertion - well, that's the current definition of ME after all. It may not be 100% direct evidence of the benefits of pacing but it's plenty enough to justify the recommendation for pacing as a management strategy to reduce time spent with PEM and thereby the day-to-day symptom burden.

However, there's next to no research on the long-term effects of pacing on the overall course of the illness. Off the top of my head I can only think of one study by Jason that found people staying in their energy envelope had decreased fatigue after 3 or 4 years, or something in that vein. Mostly we just have observed correlations. Of course, given the objective findings from the provocation studies it's reasonable to hypothesise that repeatedly heaping new exertion on top of an already dysregulated system is going to make matters worse, reason to be careful for sure. But it's also possible we're just dealing with random bad or good luck and that when we get better or worse we rationalise after the event that it must have been caused by this or that.

So good on the authors here to at least try to have a go at this question in Long Covid.

I'm pretty sure we've discussed ways to study pacing elsewhere, involving prospective enrolment, heavy and clever use of actimetry, etc etc etc. So not going to go into that here.

What interests me here, since nobody seems to be doing any solid prospective pacing studies, is the question whether there still is some way to dredge up some useful retrospective data, somehow. Basically what the authors here tried to do, but bigger and better.

Much bigger cohorts might help distinguish a more reliable signal from the noise but how big is big enough?

The next question is, is the questionnaire used here fit for purpose? I've now found the actual questionnaire used in this study for assessing adherence to pacing. It was hiding in the additional files.

Rating is: never, rarely, sometimes, often, very often

1. During the day I plan several moments to recover.
2. I perform my activities at a slow pace.
3. When performing my activities, I take my fatigue into account.
4. I alternate intensive activities with less intensive activities.
5. I divide my activities over the day.

A thought experiment:

Let's say two equally ill people start pacing and are equally good at it. Person 1 is on a natural recovery trajectory and person 2 is not (of course nobody actually knows this). If you ask person 1 to retrospectively rate their pacing it's likely they'll report positively on their adherence to pacing; they're getting better so they feel they must have been doing something right. Person 2, on the other hand, is likely to report the exact same level of adherence to pacing more negatively; they're not getting better so they feel they must be doing something wrong. And whoops, you've just conjured up a potentially false positive correlation between pacing and improvement, just from biased reporting. But we still don't know if there was any real effect beyond the biased reporting. How large an effect would you have to find to be able to say with some certainty that it's real?

That was just a thought experiment which shows how difficult it is to get solid findings with retrospective questions. But there must be ways to retrieve at least some useful information from retrospective studies