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

Discussion in 'Long Covid research' started by Andy, Dec 4, 2022.

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  1. Trish

    Trish Moderator Staff Member

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    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, Dec 18, 2022
    #41
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  2. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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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.
     
    InitialConditions, Dec 19, 2022
    #42
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  3. dave30th

    dave30th Senior Member (Voting Rights)

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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, Dec 19, 2022
    #43
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  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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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.
     
    Peter Trewhitt, Dec 19, 2022
    #44
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  5. wastwater

    wastwater Senior Member (Voting Rights)

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    Last edited by a moderator: Dec 20, 2022
    wastwater, Dec 19, 2022
    #45
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  6. Trish

    Trish Moderator Staff Member

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    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.
     
    Trish, Dec 20, 2022
    #46
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  7. Sean

    Sean Moderator Staff Member

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    Gaslighting the desperate. About as low as it gets.
     
    Sean, Dec 20, 2022
    #47
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  8. Trish

    Trish Moderator Staff Member

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    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.
     
    Trish, Dec 20, 2022
    #48
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  9. Trish

    Trish Moderator Staff Member

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    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, Dec 20, 2022
    #49
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  10. Sean

    Sean Moderator Staff Member

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    All the usual ones. :rolleyes:
     
    Sean, Dec 20, 2022
    #50
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  11. dave30th

    dave30th Senior Member (Voting Rights)

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    That's all??
     
    dave30th, Dec 20, 2022
    #51
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  12. Andy

    Andy Retired committee member

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    Andy, Dec 20, 2022
    #52
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  13. Trish

    Trish Moderator Staff Member

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    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.
     
    Trish, Dec 20, 2022
    #53
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  14. dave30th

    dave30th Senior Member (Voting Rights)

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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.
     
    dave30th, Dec 20, 2022
    #54
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  15. Samuel

    Samuel Senior Member (Voting Rights)

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    [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.


     
    Last edited: Jan 14, 2023
    Samuel, Jan 14, 2023
    #55
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  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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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:

     
    Kalliope, Jan 21, 2023
    #56
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  17. Medfeb

    Medfeb Senior Member (Voting Rights)

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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.
     
    Medfeb, Jan 21, 2023
    #57
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