2023 IIMEC15 - Alain Moreau

Discussion in 'ME/CFS research news' started by SNT Gatchaman, Jul 18, 2023.

  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Last edited: Jul 18, 2023
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  2. LarsSG

    LarsSG Senior Member (Voting Rights)

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    The bit about generally lower, and for some asymmetrical between left and right hemispheres, cerebral oxygen levels was quite interesting (though brief). There is a little more in the Q&A at the end as well.

    More evidence for a problem with oxygen delivery in some form, is what I take from that.
     
  3. Hutan

    Hutan Moderator Staff Member

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    I think we may have commented about this before, but I'm not keen on the Moreau team applying the inflatable cuff as a stressor and then making measurements 90 minutes later and saying that these are measurement of PEM.

    They might measurements of a stress response, in much the same way that the second of two CPETS, 24 hours apart, is. But for something to be a measurement of PEM, I think the person should be experiencing the incapacity of PEM, the needing to lie down, the inability to do anything else.

    I know it's semantics, but I'm not sure how we can expect doctors to understand how awful PEM is if our researchers suggest that a bit of time with an inflatable cuff causes it within 90 minutes , and that the person with "PEM" is entirely capable of completing a battery of cognitive tests.
     
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  4. Trish

    Trish Moderator Staff Member

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    Even the well intentioned researchers are still mixing up fatiguability with PEM as most of us on this forum understand it. It's not helped by the fact that it's not well described on some of the diagnostic criteria.
     
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  5. Hubris

    Hubris Senior Member (Voting Rights)

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    PEM clearly has two stages, the one during and right after exertion and the crash that happens a day after. Any study with PEM should investigate both.
     
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  6. Trish

    Trish Moderator Staff Member

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    I think that's problematic.

    By all means research the regular fatiguability after any activity that leads to symptoms right after exertion, but I don't think that can be assumed to be part of PEM unless it's followed over subsequent days by delayed PEM.

    I found this video helpful in explaining the differences:https://www.s4me.info/threads/post-...e-cfs-webinar-for-health-professionals.33887/
     
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  7. Hubris

    Hubris Senior Member (Voting Rights)

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    That's what I meant, when patients exert themselves in a way that leads to a crash days after, they need to measure not just the crash but also what happens in the previous day(s). We need to have all the data without underlying assumptions.
     
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  8. Medfeb

    Medfeb Senior Member (Voting Rights)

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    In their research, Workwell has documented that some symptoms of PEM show up fairly soon after the onset of exercise (link) and have suggested that if patients are able to recognize these early symptoms, they can reduce the severity and/or duration of PEM by stopping/reducing the trigger.

    Admittedly anecdotal but that seems to fits what I've seen with one patient - head pressure within 20-30 minutes of browsing on a phone while supine, headache if they went longer and if they went longer still, a next day crash rolled up in a ball with whole body pain. But that next day full crash didn't happen if they kept the browsing short.

    Is this part of what other patients do when pacing? And what would that early onset of worsened symptoms be called if not PEM. Wouldn't it be important to study PEM across its time course from triggering event to "resolution"?

    I have mixed feelings on this approach...
    Studies using exercise challenges have provided significant evidence of the ME abnormal response to exertion but are hard on the person with ME. If as above, PEM can have differing levels of severity and duration depending on the magnitude of the trigger, is this a gentler way of invoking the disease enough to see those changes?
    But I'd like to see how it compares to CPET study findings. I don't think that's been done yet and there are also few if any studies outside of one lab.
     
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  9. Mij

    Mij Senior Member (Voting Rights)

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    Do we know if immediate PEM is the same or similar as delayed PEM?
     
  10. Trish

    Trish Moderator Staff Member

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    I agree.

    My concern is about research that only looks at the immediate effect in the few hours after the exertion, and doesn't follow up to see if it has triggered PEM, yet they say they are researching PEM.
     
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  11. Trish

    Trish Moderator Staff Member

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    My problem is I often push myself to my limit and rarely know until it's too late whether I've triggered PEM. One could theoretically advise me to stop pushing to my limit, but life's not like that for a lot of us I think.

    Part of the problem from my experience also is that PEM is most often a result of a cumulation of activities that wouldn't each on their own be enough to trigger PEM, so don't necessarily give alarm signals. Then you wake up the next day crashed.
     
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  12. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Good points. AFAIK, the studies of PEM have not looked at the cumulative effect of multiple triggers. Leaves me wondering how such a study would be conducted/what would be required.
     
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  13. Trish

    Trish Moderator Staff Member

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    I think multiple cumulative triggers effect can probably only be studied in longitudinal studies using continuous real time data from wearables, and apps to record symptoms and cognitive activity. As wearables get more sophisticated they can do some biochemical readings too like the thing diabetics wear to measure sugar levels.
     
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  14. Hutan

    Hutan Moderator Staff Member

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    Yes, this. I'm not objecting to the use of the cuff, and monitoring the response to it 90 minutes later. It's the suggestion that this is measuring PEM.

    Yes, it's semantics, but crucial semantics. I think malaise needs to be present for something to be post-exertional malaise. A response to a stressor is important to look at - it is 'post-exertional', but it isn't necessarily 'malaise'. For me, PEM is the crash, the misery, on a bed.

    Maybe 'post-exertional response at 90 minutes' versus PEM?
     
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  15. Solstice

    Solstice Senior Member (Voting Rights)

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    If I have a moment of respite I can actually feel it coming. It's more about awareness with me, take a moment to actually feel yourself out. The problem is that when I'm tired I lose track of basically everything because of brain fog and I start doing stupid stuff. I'm on the computer for way too long now for example after an intense 1,5 hours of walking around with my nephew catching pokemon this afternoon :D . If you hadn't collective brought this up I probably would've gone on, but now I'm gonna turn in for the night after some relaxing telly.
     
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  16. Medfeb

    Medfeb Senior Member (Voting Rights)

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    I agree its not sufficient to just monitor the post-trigger response for 90 minutes.

    But would that imply there are two separate biological processes going on, one for the immediate response and one for the next day response?

    Or could the evidence suggest there's one process/cascade of processes where the severity and duration depends on the person's baseline, the nature and magnitude of the trigger or triggers, genetics, etc
     
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  17. Hutan

    Hutan Moderator Staff Member

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    Probably the latter, and, in any case, the processes would be very much related.

    For sure, something starts to happen after exertion. But, there must be an additional thing, either a molecule gets to a level that can't be neutralised and starts to cause new symptoms, or that level of molecule triggers a new process that results in the pain and inability to think well and need to be horizontal, as well as, sometimes, sore lymph nodes and sore throat.

    What I'm trying to get at is that a measurement made 90 minutes after exertion is not the same as a measurement made during florid PEM. We don't want researchers or decision makers comparing measurements made at these two times as if they were measurements of the same thing and concluding that results are all over the place and that further research is too difficult.
     
    Last edited: Jul 19, 2023
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  18. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Agree with this.
     
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  19. LarsSG

    LarsSG Senior Member (Voting Rights)

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    I agree that Dr. Moreau plays a little too fast and loose with the term PEM in regards to his massage cuff, but I'd also say that for most of his results, the before and after aren't really important at all (mostly it's the difference between the controls and the patients overall, not specifically in their response to the stressor).

    But also, I think the difference in the cognitive testing results before and after the stressor, whatever you want to call it, are pretty compelling that something is going on. Reduced cognitive capacity as a fairly immediate effect also accords with my own experience. Ideally, they'd also do tests the next day or two days later, but if this is an abnormality that they can run with that's more practical to test, then that seems like a pretty good thing.
     
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  20. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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