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Action CIND Webinar: "Why Working out Doesn’t Work" by Workwell Foundation

Discussion in 'General ME/CFS News' started by ahimsa, Dec 19, 2019.

  1. ahimsa

    ahimsa Senior Member (Voting Rights)

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    The video from the Action CIND webinar on Dec. 11th, featuring speakers from Workwell Foundation, is now available on vimeo (about 1 1/2 hours long).

    Why Working out Doesn’t Work. Answers from 20 years of cardiopulmonary exercise testing (CPET) in ME/CFS



    I don't think the video will play if embedded so here's the link on vimeo.com:
    Code:
    https://vimeo.com/380338703
    PS. I don't think the video has any subtitles or closed captioning.
     
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  2. ahimsa

    ahimsa Senior Member (Voting Rights)

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    By the way, I have not watched this myself yet. I have trouble watching long videos

    I do better with reading and even then have trouble absorbing and understanding things!
     
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  3. Hutan

    Hutan Moderator Staff Member

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    The introduction of the speakers runs for 8.30 mins - you might want to skip it.
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    The unintended downside of an increase in research the past few years is there's way too much stuff to follow and watch and I also have little capacity to listen to something longer than 30 minutes, especially when it's information-dense.

    Though fortunately I don't think our future will be decided by clicks and view counts so there's that :)
     
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  5. Sean

    Sean Senior Member (Voting Rights)

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    I long ago became unable to keep up with it, whether as text, audio, or video.
     
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  6. Trish

    Trish Moderator Staff Member

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    If you don't want to watch it all, the core of the video is from about 9 minutes to 48 minutes. After that it's general stuff about plans and funds, and then Q&A which I haven't watched.

    I think the slide at 22:38 minutes is interesting. It gives a description of PEM in 3 stages - immediate, short term and long term with systems affected and symptoms for each of these. I don't know how to screenshot it to show it here.

    I think the key practical point, which we've already seen from their research, is that people with ME have a different response to the second day CPET from people who are deconditioned or have other fatiguing illnesses, and that 2day CPET is useful for individuals who need evidence for disability benefits, and for finding out your personal anaerobic threshold, so you can then use constant heart rate monitoring to try to avoid PEM, both short term, and long term worsening.

    There was also stuff about what the CPET is showing for ME in terms of getting oxygen to tissues and using it. I got a bit lost there. I'll leave that for someone else to summarise.
     
    Last edited: Dec 21, 2019
  7. strategist

    strategist Senior Member (Voting Rights)

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  8. JemPD

    JemPD Senior Member (Voting Rights)

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    That is a very good description. I don't know whether it's caused by exceeding AT, (is that proven?) but its a good description nevertheless xxx
     
  9. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Yes, their research may be wrong or be superseded one day but it is the first which matches my symptoms so exactly. Every new thing I read about their work is just a better description. It has given me a way to think about what is happening to me and, even better, it has given me a way of managing what I do with obviously good results.
     
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  10. Medfeb

    Medfeb Senior Member (Voting Rights)

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    I don't think their research is saying that PEM is "caused by" exceeding AT but rather that patients with ME have an abnormal response to exertion which is reflected in a lowered AT and other parameters that show up on CPET, particularly on the second day. What causes those changes and the PEM itself is still an open question

    The diagram above posted by Strategist is interesting in its suggestion that there are early signs of overdoing energy limits that could be used as a warning. Have others seen those signs?
     
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  11. chrisb

    chrisb Senior Member (Voting Rights)

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    I suppose one would need to know whether the symptoms given are merely representative examples or whether they are meant to be all-embracing and generalisable. Some of the symptoms suggested seem recognisable, but not others. Others one might have, such as gait problems or ataxia like symptoms, are not mentioned. I am not even sure that any individual would have a consistent pattern. Each of us has our own illness.
     
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  12. Mij

    Mij Senior Member (Voting Rights)

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    Yes, huge 'sign'.

    to add: gait problems can occur after cognitive overexertion (talking too much).
     
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  13. JemPD

    JemPD Senior Member (Voting Rights)

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    yes... I find that one of the weirdest things - it makes me wonder what on earth the mechanism could be that makes me unable to control my limbs/walk properly after thinking/talking too much. It's not just weakness but proprioception & all coordination goes completely haywire.
     
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  14. Mij

    Mij Senior Member (Voting Rights)

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    @JemPD I've walked into the wall several times because I could coordinate my legs after socializing for a couple of hours.
     
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  15. Ravn

    Ravn Senior Member (Voting Rights)

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    Thank you. You just solved a puzzle for me. I've only just realised that every time when I go on my half-hour monthly outing to the local cafe I walk in normally and walk out all wobbly and in a jerky line. And I couldn't work out how sitting in a cafe semi-reclining and with my feet up, much the same way I sit a home, could have such an odd effect on my legs. Well, I still don't understand it but it's good to know it's not just me - though at the same time I'm sorry it's others, too, because it's rather annoying.
     
    Last edited: Dec 24, 2019
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  16. Ravn

    Ravn Senior Member (Voting Rights)

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    If that slide was intended to be thought provoking they have succeeded. The more I think about it the more questions I have.

    They have non-physical PEM triggers on the slide, which is good. What I don't understand is if they also view non-physical triggers in terms of anaerobic thresholds being passed, e.g. brain cells working so hard that their broken aerobic system can't deal with it (that's if brain cells even have such a system?)? Or do they assume a different mechanism for non-physical triggers but don't go into it because that's not their specialty?

    Should the immediate symptoms listed - fatigue, shortness of breath, dizziness, nausea - be considered part of PEM? I agree that there can be immediate symptoms. I get those if I overexert really badly. However, stopping overexertion before any symptoms appear still leads to PEM down the track. Also, as they say in the video, they're the sort of symptoms everybody gets if they overexert badly, so they're not specific to ME, it's only that us PwME hit that overexertion threshold a lot sooner.

    Do they mean PEM symptoms occur in a linear fashion? The slide could give the impression that after the immediate symptoms first you get a certain range of symptoms for 2-4 days and then, if you have more severe PEM, you move into a second set of different symptoms. Even after listening to the video I'm not really clear if that's what they mean? At one point it sounded like it, at another time it sounded like they thought people get either short-term or long-term PEM? Can anyone clarify?

    At any rate, neither of the above matches my experience. I get all the symptoms they've listed for both short- and long-term PEM already on day 1. For me the difference between shorter and longer PEM, apart from duration, is in the intensity of the symptoms, not the type. In fact flu-like symptoms, listed under long-term on the slide, for me start to niggle already about 4 hours after overexertion, mild at that point, more like a common cold coming on, but then rev up the next day to full flu-like misery.

    So I think they're onto something with their concept of a cascade of stuff happening right from the start but I don't think it's as linear as the slide suggests. My sense is that the first trigger sets off many or all the different symptom pathways, for want of a better term, at the time the trigger occurs, so before even the 'immediate' symptoms show. Initially those symptom pathways are so mildly activated we don't perceive anything but they keep activating more and more (maybe some sort of evil feedback mechanism?) until we can perceive the symptoms, and then they activate even more...

    Another slide at 39:25 comparing healthy, ME baseline, ME PEM, and deconditioned is good. I still wonder if certain people who shall remain nameless would try to twist it to say that we're not only deconditioned but extremely deconditioned? They'd have to explain the difference between baseline and PEM: can we really get that much more deconditioned overnight? - but they'd probably just ignore that little problem of logic.
     
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  17. JemPD

    JemPD Senior Member (Voting Rights)

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    (took the liberty of correcting assumed typo :) )

    yes lol, i'm covered in bruises because of that phenomena. And it's always a surprise, I never expect it even after nearly 2 decades.

    I'd love to know what the BPS assumed mechanism for that is. I can't see how deconditioning can cause it.... walking slowly but fine 10mtrs then laying reclined talking quietly for an hour having a lovely gentle uplifting chat with a loved one... then speech goes slurry & difficult to understand & when I get up to go to the loo I'm always surprised to find my gait gone wonky, can't control legs & I aim to go in one direction but travel in another, or sometimes just fall over.... Like I drank a bottle of vodka instead of a cup of tea.... How can that possibly be 'deconditioning'?

    eta: sorry for thread drift
     
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  18. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I think the leg problems are important. I still have some.
    When I was much worse it happened my legs suddenly refused to carry my weight.
     
  19. chrisb

    chrisb Senior Member (Voting Rights)

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    A few days ago I came across a description of how all these symptoms were stripped out of the disease to leave just fatigue. I am trying to find it again. I think it was in the Wessely/Thomas paper of 1990. When I read it I thought that all the things the described the condition had been deliberately removed.

    If I find it I will let you know.
     
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  20. Mij

    Mij Senior Member (Voting Rights)

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    "@JemPD I've walked into the wall several times because I couldn't coordinate my legs after socializing for a couple of hours".
    The CBT crowd would have a good time with that one- that I deliberately walk into walls for attention :laugh:
     

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