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.

 

That article gives a ridiculously positive spin on the research. Looks like a press release by the researchers way overclaiming the effect of the trial.

 

Gaslighting the desperate. About as low as it gets.

 

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.
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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.

 

All the usual ones.

 

Very good, thanks @dave30th. 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.