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Preventing Post Exertional Malaise - online talk with Staci Stevens and Dr Mark Van Ness - Thurs 22nd Oct 2:30pm

Discussion in 'General ME/CFS News' started by Gecko, Oct 14, 2020.

  1. Gecko

    Gecko Senior Member (Voting Rights)

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    Preventing Post-Exertional Malaise – Pacing and Energy Management in ME/CFS

    An online talk by Staci Stevens and Dr Mark Van Ness of the Workwell Foundation for Sheffield ME & Fibromyalgia Group

    2:30pm Thursday 22nd October

    [​IMG]


    More info here: https://www.sheffieldmegroup.co.uk/post/online-talk-preventing-post-exertional-malaise-pacing-and-energy-management-in-me-cfs

    The talk will be held on zoom, you'll need to register first to access this. It will also be livestreamed to Sheffield ME & Fibromyalgia Group's facebook page. It will be uploaded to YouTube afterwards and I will post that here when it's done.

    Register here
    Will see some of you lot there I'm sure :)
     
  2. Trish

    Trish Moderator Staff Member

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    Thanks, @Gecko. I've added it to the calendar.
     
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  3. Gecko

    Gecko Senior Member (Voting Rights)

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    Amazingly, we've got about 320 registrations for this event so far!

    We've been reaching out to long covid groups as well, and so hope this can have relevance to many people, and in an ideal world stop some of those who are developing ME from pushing themselves into a more severe state.

    Had to get the next level of zoom subscription to enable so many people to attend :laugh:

    Hope to see you there.
     
  4. Wonko

    Wonko Senior Member (Voting Rights)

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    The page suggests that registration is not needed to watch, but is if people want to participate.

    Is this correct?
     
  5. Gecko

    Gecko Senior Member (Voting Rights)

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    You can watch via facebook without registering, but if you want to watch via zoom itself you'll have to register.

    We'll keep an eye on comments on Facebook, as well as engaging in the comments on zoom. So you should be able to put forward questions through either platform, with the proviso that we may not be able to ask them all.
     
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    Will this be recorded to view later?
    Unfortunately will be out on Thursday afternoon.
     
  7. wingate

    wingate Established Member (Voting Rights)

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    Thanks for sharing- this looks interesting!

    I'll look forward to it coming out on YouTube!
     
  8. Gecko

    Gecko Senior Member (Voting Rights)

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    Yep, will be available on Facebook immediately afterwards and we'll upload it to YouTube asap :)
     
  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    Brilliant thanks
     
  10. Gecko

    Gecko Senior Member (Voting Rights)

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    Live on facebook atm - some really good advice from Staci and Mark.

     
  11. Gecko

    Gecko Senior Member (Voting Rights)

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    Had to remove video from facebook due to some issues. Will be reuploading it asap and posting on youtube as well. I'll add links here when available.

    It was an excellent talk full of practical advice. I'm deeply grateful to Mark and Staci for speaking to the Sheffield Group.
     
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  12. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Am looking forward to seeing the recording. There have been some very positive comments on Facebook.

    [corrected spelling]
     
    Last edited: Oct 22, 2020
  13. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Excellent work @Gecko please pass my thanks onto all the organisers.

    It was a really good and thought provoking talk, even for “someone who thought they were pacing well”!!
     
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  14. Fizzlou

    Fizzlou Established Member

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    Interesting presentation, surprised at level of energy expenditure in digestion. Such a different message from what we are taught in UK, in some ways good but in other ways pretty depressing. "Walking contraindicated" says Mark near the conclusion due to time involved more than actual HR.
     
  15. Gecko

    Gecko Senior Member (Voting Rights)

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    I felt this deeply during the talk. Really made me wonder what my life could have been like if I wasn't advised not to get aids (especially ear defenders which massively helped me), and if I wasn't constantly being told to find that little way of increasing my activities - like pushing my sofa another metre away from the living room door to increase how far I had to walk from my bed when severely ill. :banghead:

    A totally different attitude that utterly validates our need to decrease not increase energy expenditure.

    (Hopefully get recording back up tmr.)
     
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  16. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    Data point of one: For me, walking is poison, leads to a crash of several weeks with utterly zero benefit. It does not reach the threshold to provide exercise. The only thing worse than walking is standing.

    With a series of conditions and restrictions too long to insert here, real exercise (HR in aerobic conditioning zone, sweat, etc) provided a lift. It may also have had costs which were not immediately obvious, I can’t tell. It’s been quite a while since I’ve tried that, it required about 3 weeks of doing almost nothing other than total rest and that few minutes of exercise on 1 day out of 3. What I don’t know is if that was cutting both ways - doing some good and some harm. It did provide some benefits which no Rx has equalled.
     
    Last edited: Oct 24, 2020
  17. Gecko

    Gecko Senior Member (Voting Rights)

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  18. Trish

    Trish Moderator Staff Member

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    Thanks, @Gecko, you're doing a very valuable job.
     
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  19. Gecko

    Gecko Senior Member (Voting Rights)

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    Thank you @Trish. Though gotta say most of this not me - Elyane, our communications officer, is doing an incredible amount at the moment, along with the trustee board, and 2 benefits advisers. I am a very small cog in this machine.
     
  20. Trish

    Trish Moderator Staff Member

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    Well done to all of you!
     
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