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

Gecko

Gecko

Senior Member (Voting Rights)
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

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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
During this event, recent findings about post-exertional malaise (PEM) will be shared, as well as their relevance in determining pacing strategies and energy conservation. These studies help elucidate the origins of post-exertional malaise in ME/CFS and explain why certain strategies are helpful in managing the illness. This talk will also be of interest to people suffering from Fibromyalgia, and for patients recently struggling with post-viral fatigue following COVID-19 infection.


This talk will include information from our guests' recent manuscripts, heart rate monitoring and energy conservation tips.
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Will see some of you lot there I'm sure :)
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See also this thread on another Workwell team talk at about the same time:
Video: Energy Management in Chronic Illness: Practical Tips, pts 1&2 [Workwell and Whittemore Peterson Institute]
 
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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.
 
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.
 
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.
 
Gecko said:
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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Am looking forward to seeing the recording. There have been some very positive comments on Facebook.

[corrected spelling]
 
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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.
 
Fizzlou said:
Such a different message from what we are taught in UK
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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.)
 
Fizzlou said:
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.
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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.
 
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