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Post-exertional Malaise in ME/CFS - Webinar for Health Professionals - Dr Cathy Stephenson

Discussion in 'Resources' started by SNT Gatchaman, Jun 23, 2023.

  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Posts moved from News from Aotearoa/New Zealand and the Pacific Islands



    YouTube - Post-Exertional Malaise in ME/CFS - Management and Supports - Webinar for Health Professionals (24 mins)
    Dr Cathy Stephenson for ME Awareness NZ on World ME Day.

    I think this is a good resource for GPs and other health professionals; but also patients and family members. Includes a good discussion of PEM, its symptomatic features, triggers and management; as well as 4 minutes of a patient's experience (a former health professional going from full health to severe).
     
    Last edited by a moderator: Jun 28, 2023
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I've only watched the first 5 minutes but agree its good so far.
    Also she has just mentioned 'pacing' and warned that the pacing used by pwME is different from the pacing programs used for example for chronic pain. She has said she will cover this in more detail later in the video.
    This point in particular needs to be more widely exposed. (see various threads on 'pem' and 'pacing' tags).
     
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  3. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Yes I think it comes down to the difference between pacing and "pacing up".
     
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  4. RoseE

    RoseE Senior Member (Voting Rights)

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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    aka the difference between "spend like you're a rich person and you'll become rich" vs "when you are rich, you can spend like a rich person".
     
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  6. Ravn

    Ravn Senior Member (Voting Rights)

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    The video covers several points rarely stressed enough in education materials imo, notably the difference between exercise intolerance & PEM; cumulative exertion; what pacing for ME is and, importantly, what it is not; and practical things health professionals can do to support a pwME's pacing efforts (as opposed to either micromanaging them or leaving them to cope all on their own)

    For those unable to watch/listen, there's a link to the slide deck. There's a little bit extra in the video itself but the deck gives a good idea of the content if you want to check whether you want to share the video with your healthcare provider
    Or you may want to jump in just for a specific topic, for example the moving video within the video of a patient describing her PEM experience at 11:46min
     
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  7. Trish

    Trish Moderator Staff Member

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    I haven't watched the video yet, but have read through the slides. I think they are the best resource I've seen for succinctly summarising key aspects of PEM and pacing.

    I also particularly like the clarification of the differences between PEM, PE fatigue and exercise intolerance. I suspect most of us have all 3 but they are very different, and diagnosis should require clearly identifying whether the patient actually gets PEM.

    And the clarification of the importance of not confusing ME/CFS pacing which is not pacing up, and pacing used for other conditions such as pain that involve gradually increasing activity.

    Also she makes it clear that pacing is a management strategy aimed at improving quality of life, not a treatment.
     
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  8. Hutan

    Hutan Moderator Staff Member

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    It's not often I can recommend an ME/CFS educational resource without reservation, but I can certainly do that for this video. It is very good, and suitable for educating health professionals.

    Thanks @Ravn for your involvement in this very effective video.
     
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  9. Kitty

    Kitty Senior Member (Voting Rights)

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    I've only looked at the slides so far, but they're excellent. It's really good to see the inclusion of mobility equipment as a potential way to conserve energy.

    Hopefully the video will help shift the narrative a bit. We need friends and family to understand that being good allies, especially to less severely affected patients, can be more like supporting someone trying to lose weight or quit drinking than anything else! They can help steer us away from situations where we're most likely to fall off the wagon (i.e., get carried away and do too much), and they can quietly encourage us to stick to the plan when we're showing signs of getting bored with it, by reminding us how bad we'll feel if we throw caution to the wind. A couple of old friends keep an eye on me in this way, and it's genuinely helpful.
     
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  10. Ravn

    Ravn Senior Member (Voting Rights)

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    Phew! Having been outed :bag: for involvement of which I have only the vaguest of recollections - those memory blanks are decidedly disconcerting - it's a relief that whatever it was I contributed passes muster here ;):)

    But the video presentation must have been a team effort because I definitely had nothing whatsoever to do with creating the slide set (I think I can trust my memory on that one because I don't have the required skills to even try). So thanks for a job well done Cathy (the doctor presenting) and Jemma (the patient sharing her experience) and whoever else was involved. You know who you are, even if I can't remember

    Now, how to give the video maximum exposure?

    I believe the NZ patient orgs are trying to get it included in some continuing medical education as it might encourage more health professionals to watch if they can get credits for it. I don't know how far they got with that project, or what the chances of success are. But fingers crossed

    There's sharing on social media of course though that's more likely to reach patients than doctors I suspect. Though some patients may be able to convince their doctors to watch

    Other ideas? The question applies to all good resources, really, not just this video. It's one thing producing resources, it's another to get them disseminated and used
     
  11. Andy

    Andy Committee Member

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  12. Hutan

    Hutan Moderator Staff Member

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    I plan to send emails to the HealthPathways people tomorrow, to get this included as a resource on the ME/CFS pages (Doctor and Allied Health pages). I'll try to get it included in the Long Covid pages too.
     
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  13. Hutan

    Hutan Moderator Staff Member

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  14. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    I already asked LC Support Aotearoa to link on their website.
     
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  15. Hutan

    Hutan Moderator Staff Member

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    Message sent.

    I've also sent a message about it to the Chair of the New Zealand Ministry of Health Long Covid Advisory Group.
     
    Last edited: Jun 29, 2023
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  16. Sean

    Sean Moderator Staff Member

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    That is superb. Gold standard. :):):)

    Every person with any connection to the ME/CFS world needs to see this. Spread it far and wide, folks.

    Huge thanks to all who contributed. Stuff like this is what gives me hope. :thumbup: :hug:

    [Link to PDF containing the slides.]
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    also pleased to see the use of 'mild' and 'moderate to severe' (as opposed to the usual mild/moderate).

    With permission, I wonder if it might be worth creating another version with minor editing (mostly the stuff at towards the end about education etc) to make it applicable to all.

    It is an excellent explanation of PEM and all it entails that I have not seen properly covered like this anywhere.

    posting the direct link so people can view it here.

    https://www.youtube.com/watch?v=N2RCAthr3TA


     
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  18. Ravn

    Ravn Senior Member (Voting Rights)

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    @RoseE
     
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  19. AknaMontes

    AknaMontes Senior Member (Voting Rights)

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    The pacing for ME really does need differentiating, as it is a safety issue, pacing to prevent PEM to reduce risk of deterioration and possibly bring a small improvement, not a means of rehabilitation or 'improving lifestyle' as described on one of the uk 'chronic fatigue' sites. I'm concerned by the lack of clear language around pacing and PEM prevention identifying it as a safety issue rather than just to keep patients a little more comfortable by reducing 'boom and bust', whatever that means.
     
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  20. Hutan

    Hutan Moderator Staff Member

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    An update

    Health Pathways
    The webinar will be included in the Allied Health Pathways page for Canterbury, New Zealand by the end of the year when it is updated.
    It will be included in the next update of Health Pathways page for doctors for Canterbury, New Zealand.
    I'm not sure how those updates affect Health Pathways pages elsewhere in the Health Pathways system, but Canterbury's pages were marked as templates for other regions to use.
    The Long Covid Health Pathways page for doctors for Canterbury, New Zealand links through to the ME/CFS page.

    New Zealand Ministry of Health re Long Covid
    The Ministry of Health has been informed about the webinar via the person who was the chair of the Long Covid Advisory Group (that group has since been shut down with their responsibilities being subsumed into the ministry).
     
    Last edited: Jul 12, 2023
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