Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort... 2022 Parker et al

I've been taking another look at this, and something doesn't make sense about this research and the conclusions drawn from it. As far as I can see the patients mostly stayed within the low intensity activity, things like walking and light household tasks over the 6 weeks.

Also their description of PEM after physical activity occurring immediately and usually only lasting a few hours is not what we would call PEM. And they only had a few PEM symptoms. So what I would call the effect of fatiguability they are lumping in with PEM.

And their main outcome measure was the number of PEM eplsodes in a week, which dropped significantly.

But - I can't see anywhere any recording of how much activity the participants were doing each day. No actimeters, no daily diaries with active hours recorded, nothing.

So what seems likely is that the participants were reducing the frequency of what they called PEM by significantly cutting back on activity (physical, cognitive and emotional). So at the end they felt a bit better and more in control and were having fewer symptoms, not because they were increasing activity, but because they were cutting back to reduce PEM, ie pacing.

The Borg stuff seems like a bit of a red herring, since they didn't make meaningfully significant progress through the activity levels, and nor is there any evidence that they either increased the amount or intensity of activity.
 
Trish said:
Also their description of PEM after physical activity occurring immediately and usually only lasting a few hours is not what we would call PEM. And they only had a few PEM symptoms. So what I would call the effect of fatiguability they are lumping in with PEM.
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Yep. And being able to attribute PEM as a discrete episode attributable to X, Y, or Z, is just nonsense. Doesn't work like that. This is gross oversimplification.
 
Trish said:
Also their description of PEM after physical activity occurring immediately and usually only lasting a few hours is not what we would call PEM. And they only had a few PEM symptoms. So what I would call the effect of fatiguability they are lumping in with PEM.
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I also found that aspect was confusing. Having multiple mini-PEMs a week does definitely sound more like people did something and got fatigued--perhaps from deconditioning--than that they actually suffer from PEM.
 
dave30th said:
I also found that aspect was confusing. Having multiple mini-PEMs a week does definitely sound more like people did something and got fatigued--perhaps from deconditioning--than that they actually suffer from PEM.
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People with ME, but other conditions too, experience rapid fatiguability, we can get more tired more readily from an activity than pre-morbidly. Also things like hypersensitivities and orthostatic intolerance can can trigger a need to rest immediately. But these issues are not PEM, in that they are modality specific and rapidly resolve with rest, this lacks the paradoxical features of PEM, though failure to stop and to rest can result in these activities or stimuli triggering or contributing to the triggering of subsequent PEM.

It definitely sounds like this study is reporting on rapid fatiguability, rather than PEM; either the authors have failed to understand what people with ME mean by PEM or their operational definition is so lose if fails to adequately distinguish wider fatigue issues from PEM. This is not the first paper where BPS researchers have misidentified what PEM is, it is a continuation of the longstanding failure to understand the distinction between fatigue and ME specific symptoms.
 
I've found the press release the article is based on.
https://www.leeds.ac.uk/news-health...pressive-results-with-long-covid-pacing-trial
University of Leeds
Impressive results with long COVID pacing trial
It makes it sound like the patients returned to their normal activities after 6 weeks, which is way overclaiming what the research actually showed.

The press release has been picked up by other media too:

Long Covid therapy reports 'exciting' results - Personnel Today
https://www.personneltoday.com › long-covid-therapy-...

1 day ago — He said of the programme: “Long Covid affects around two million people in the UK and it has an impact on their quality of life and in some ...

New long COVID rehab programme gives ... - Euronews
https://www.euronews.com › next › 2022/12/19 › new-...

18 hours ago — “Long COVID affects around two million people in the UK and it has an impact on their quality of life and in some cases, their ability to work. ...

Long covid breakthrough in Leeds as patients report success ...
https://www.yorkshirepost.co.uk › health › long-covid-...

4 days ago — Up to two million people in the UK suffer from the post virus syndrome, which can cause dehabilitating exhaustion, brain fog and breathlessness.
_________________

The sad thing is that there are actually some good things about this program - it starts by cutting back activity then gradually returns to what they were attempting before the trial but uses heart rate monitoring and symptoms to guide whether it's OK to increase intensity of activity, and they are advised not to go up a level unless they are stable and not getting what they call PEM. That all sounds OK, provided they really do hold back from increasing activity if it sets off symptoms, and aren't pushed to try a bit more each week.

There's a case study from someone who did it a year ago, and she says she has improved but admits even after a year she's not back to doing some things she did before getting sick.
 
I think the main problems with this study are:

- they only ran it for 6 weeks, when they really need at least 6 months, preferably a year

- they didn't monitor activity levels objectively with actimetry, so there's no recording of whether patients are actually doing more

- no control group - a group advised about symptom contingent pacing and heart rate monitoring without encouragement to keep increasing activity might be a good control group. It's not clear to me what value, compared to symptom contingent pacing advice, the Borg scale thing contributed to the process.

- unblinded trial with subjective outcome measures.

- a misunderstanding of PEM. I think it's likely some of the patients did experience PEM not just tiredness and breathlessness after activity for a few hours, but that's not properly defined so mixed with PEF and fatiguability

- no measure of levels of cognitive activity, or of whether cognitive problems improved

- no pre and post testing of anything objective like 2 day CPET and cognitive tests.
 
Trish said:
I think the main problems with this study are:

- they only ran it for 6 weeks, when they really need at least 6 months, preferably a year

- they didn't monitor activity levels objectively with actimetry, so there's no recording of whether patients are actually doing more

- no control group - a group advised about symptom contingent pacing and heart rate monitoring without encouragement to keep increasing activity might be a good control group. It's not clear to me what value, compared to symptom contingent pacing advice, the Borg scale thing contributed to the process.

- unblinded trial with subjective outcome measures.

- a misunderstanding of PEM. I think it's likely some of the patients did experience PEM not just tiredness and breathlessness after activity for a few hours, but that's not properly defined so mixed with PEF and fatiguability

- no measure of levels of cognitive activity, or of whether cognitive problems improved

- no pre and post testing of anything objective like 2 day CPET and cognitive tests.
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That's all??
 
Trish said:
I think it would be worth sending a copy of your article to the researchers, their university that published the statement quoted in the press, the press that quoted it and the editor of the journal that published the research paper.
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well, I'll likely send either a formal letter to the journal or maybe a letter directly to the editor. or maybe both. I'll mull it over. It's just weird when researchers acknowledge they can't make causal statements and then make causal statements. Beyond everything else wrong with it.
 
[idk if this note shoulodbe a separate thread but this paper is a good example.]

advocacy is, incontrovertibly and significantly, self defense. i don't think we should ever lose track of that.

and as a principle of advocacy strategy, i like it when we address, after careful consideration, not only the stupidity of the paper, along with the authors or the journal, but ALSO address the funders, the institutions under whose aegis the paper is initiated and permitted and promoted and protected, and those who use the paper as pretext for policy.

that is because, behind any paper, or --- fusillade --- of them, or widespread and systematic campaign of lies, there are MANY individuals and institutions whose names need to be in the spotlight and kept as brightly lit as possible.

and that spotlight needs to follow them when they try to move from it. and in addition to pointing out that they have tarnished their names, we can use law to discover more and to make all of the above who are criminally or civilly culpable face consequences after due process.

you can focus on the tip and trigger of the gun [the paper], but behind that gun is a perpetrator pointing it, and behind that perpetrator is a co-perpetrator or institution or ideology that allows that perpetrator to shoot at you.

victims are human beings. it is not ok to harm them or treat them as subhuman or means to an end.

mass human rights violations and atrocities look like this. you notice the individual act or paper or fool. it looks individual.


Andy said:
Full title: Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome

Background

Post Exertional Symptom Exacerbation (PESE) is a characteristic symptom of Post-COVID Syndrome (PCS).

Objectives
This prospective study investigated the effect of a 6-week structured World Health Organisation (WHO) Borg CR-10 5-phase pacing protocol on PESE episodes and quality of life in a cohort of individuals with long-standing PCS (average duration of symptoms was 17 months).

Methods
Participants received weekly telephone calls with a clinician to complete the Leeds PESE Questionnaire (LPQ) and identify the appropriate phase of the pacing protocol. EQ-5D 5L was completed at the intervention's beginning and end to measure overall health.

Results
Thirty-one participants completed the 6-week protocol, with a statistically and clinically significant reduction in the average number of PESE episodes (from 3.4 episodes in week one to 1.1 in week six), with an average decrease of 16% (95% CI: 9% to 24%; p<0.001) each week, and reduction across all three exertional triggers (physical, cognitive, and emotional). Physical activity levels showed moderate improvements during the intervention period. Mean EQ-5D 5L scores improved from 51.4 points to 60.6 points (paired difference of 9.2 points, 95% CI: 3.2 to 15.2 points; p=0.004).

Conclusions
A structured pacing protocol significantly reduces PESE episodes and improves overall health in PCS.

Paywall, https://onlinelibrary.wiley.com/doi/10.1002/jmv.28373
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This study was mentioned by dr. Daniel Griffin in his clinical update podcast with This Week in Virology. The way he presented it sounded like GET, but he called it pacing. Professor Racaniello asked if this would result into the same problems as with in ME/CFS, where patients say exercise doesn't work, but no, no reason to worry according to Dr. Griffin as this was a totally different approach.

Starts at 30.42:

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Peter Trewhitt said:
(Assuming Long Covid involving PEM is in fact ME, I believe my personal experience is relevant to this study.)

My experience is that effective pacing may result in some short term increase in possible activity through the elimination of PEM and allowing recovery from the negative effects of recent overexertion. Over the short term of some six months or a year or even more it is possible to confuse this with improvement in the underlying condition rather than it just being more effective symptom management.

If as patients generally believe overexertion can permanently worsen the condition, as well as symptom management, pacing may be essential to avoid long term symptom exacerbation due to overexertion. Also it is possible that effective pacing may create the best circumstances for any spontaneous recovery to occur, though that is purely speculation. However my experience is that it does not insulate from future relapses that for many/some will occur regardless of current activity levels for reasons we do not yet understand.

Further what is most worrying about the presentation of pacing as a curative treatment is that it is setting up patients for future relapses. The apparent improvement is not necessarily an unlimited escalator. My experience has been that there is still an activity ceiling and approaching it gradually does not prevent the relapse being triggered when it is exceeded, this approach may not produce negative consequences as quickly as GET can, but the crash can be worse because of that. A period of six months or a year or even longer of apparent gradual improvement can more deeply reinforce the idea that this is a curative treatment and also allow the individual more time to take on life commitments both of which make backtracking on activity levels much harder when the ceiling is hit.

Also clinicians, whose raison d’être is rehabilitation are already primed to confuse short term improvement through better symptom management with improvement in an underlying medical condition, especially when the patient will be already long discharged when the collapse happens, will reinforce the false belief that current improvement is an endless escalator to a nirvana of total recovery rather than a step ladder within a fixed activity ceiling.

My personal experience suggests the mistaken belief that pacing is a curative treatment can result in long term or even permanent worsening of the condition. I am also aware of others who have apparently had similar experiences. Obviously it may be some do experience a permanent improvement but they then remove themselves from the patient forums, etc, so their anecdotal accounts are harder to access.

Until we have follow up over years or even decades I would argue it is very dangerous to present an approach as treating the underlying condition rather than just symptom management. We can not say yet that this approach presented as a treatment rather than a management strategy does not leave individuals in a worse condition five years down the line than they would have been without the intervention. We are aware of people ending up in a wheelchair or being bed-bound following GET, but I would argue we are likely to see the same following pacing presented as a curative treatment, but just on a longer timescale than with GET.
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Yes. Thank you for this, @Peter Trewhitt.

And beyond presenting pacing as a cure, this is true even when it's presented just as a therapy that can lead to improvement in quality of life, function, and/or burden of symptoms. It lacks the nuanced explanation for practitioners, such of the above, of what that really means in ME.
 
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