1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Factors Affecting the Characterization of Post-Exertional Malaise Derived from Patient Input, 2020, Holtzman, Jason et al

Discussion in 'Post-Exertional malaise and fatigue' started by rvallee, Sep 4, 2020.

  1. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,290
    Location:
    Canada
    Factors Affecting the Characterization of Post-Exertional Malaise Derived from Patient Input

    https://digitalscholarship.unlv.edu/jhdrp/vol13/iss2/5/

    (This would normally fit in research but is neither psychosocial nor biomedical, perhaps a category for research on clinical care is needed?)
     
    Kitty, Invisible Woman, Mij and 16 others like this.
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,573
    Location:
    UK
    Whilst I appreciate all the effort that LJ and others have been putting into this, I wish there would be more investigations to find out what exactly is happening in the bodies of pwME to produce PEM.
    The idea (that has been expressed by many others including myself) that whatever is going on is cumulative should be also be considered and looked into.
    As has been shown/seen time and again, descriptions of symptoms can be prone to all kinds of bias/influences, mis interpreted and potentially misused, no matter how well sourced.
     
    Last edited: Sep 5, 2020
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,573
    Location:
    UK
    Just off the top of my head, I'd propose moderate patients (ie mostly housebound) wear fitbits for 3 days and attend a clinic for 3 days in a row where they would have a blood sample and saliva taken.
    They could also complete whatever questionnaires that are currently available for PEM.

    I know that for me at least, just the effort of going to a clinic three days in a row would almost guarantee PEM.
     
    Sarah94, Kitty, Yessica and 7 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    51,847
    Location:
    UK
    I don't understand how a facebook chat with about 100 ME/CFS patients, most of whom made only 1 or 2 contributions to the discussion, and one person made 92 comments can be written up as useful research. Surely such a skewed input can not be useful for its purpose.

    All very laudable, and I appreciate the effort, but the list of themes seems to completely miss the point. Lots of it seemed to be more about the social consequences of PEM and problems with professionals and attitudes and interactions, which are all important areas in care for people with ME, but have nothing to do with defining what PEM is and what triggers it.

    And there's stuff about what the symptoms of PEM are, but to me PEM is about exacerbation of symptoms and recurrence of ones not present except in PEM, rather than whether my PEM happens to include a sore throat or a headache.

    It is good to see recognition that PEM is not about fatigue or tiredness.

    From the discussion:
    I need to go back and look at the PEM instrument they designed.
     
  5. Trish

    Trish Moderator Staff Member

    Messages:
    51,847
    Location:
    UK
  6. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,290
    Location:
    Canada
    I doubt any serious evaluation will reveal much until live-in research facilities are in use. That is a mixed convalescence, for clinical care, and research unit where some patients live and are part of research. It's about patterns, snapshots in time are worthless here, like a single screenshot of a video, what it shows could be entirely misleading if the frames happen to be at the wrong time.

    That's expensive. But all the cheap methods have been tried so that's all that's left. It costs hundreds of billions per year so it's not as if doing nothing is the smart economical choice.
     
    Trish, Sarah94, Kitty and 6 others like this.
  7. Graham

    Graham Senior Member (Voting Rights)

    Messages:
    3,324
    I've been thinking over the years of a better way of describing our energy envelope, because none of them tie in with being able to push through it but then develop PEM – spoons, batteries, etc. all imply a fixed limit.

    So how about this analogy:

    Remote agricultural area, where the abundant water supply is from a well and local clear-flowing stream. Life is bliss. Then climate change, and a drought strikes. Now use of water has to be very, very carefully monitored and controlled. It's possible, if really pushed, to scavenge more water from dirtly and polluted sources, which might solve an immediate need, but the consequences over the forthcoming days might be quite severe.
     
    JemPD, biberzahn, andypants and 8 others like this.
  8. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,746
    Location:
    Somerset, England
    Yes, I agree with @Graham that the 'spoon theory' gives a false impression of what PEM is as well. It's not about borrowing from tomorrow's 'spoons', which implies that you just have less spoons tomorrow. But when PWME push beyond their limits they get ill and sick, as well as possibly causing a permanent reduction in their functional abilities.
     
    Sarah94, andypants, Yessica and 6 others like this.
  9. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    5,032
    Location:
    UK
    Yes, a much better analogy.

    I describe it to other people as crossing an invisible threshold, or triggering a twitchy signal. A bit like Prof. Garner being followed by his invisible speed cameras, but no-one will tell him what the speed limit is. I often don't feel myself cross the threshold/trip the camera at all, so it's not remotely like hitting the wall of the envelope.

    (That can happen too, of course – before I got my wheelie my legs would give out without warning halfway across a room – but since I got my late ME diagnosis, I pace more effectively!)
     
    andypants, Yessica, Andy and 5 others like this.
  10. Creekside

    Creekside Senior Member (Voting Rights)

    Messages:
    932
    I think it's possible that some PWME could sustain permanent damage, but I think that's not typical. I can't even estimate how many PEM episodes I've had, and none have seemed to have caused any permanent damage. Furthermore, even after many PEM episodes, I still got temporary remissions that seemed to return me to 100% health. I believe that for most PWME, if we found the right chemical, we could take a pill and switch back to more or less 100% health within hours. A bit of exercise and microbiome rebalancing might be required for full health.
     

Share This Page