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

Thank you for this, forwarding on to long C
OVID Swedush relatives for some useful input .

 

If only the clinics here took this approach. And my GP

 

Am about halfway through watching this.

Lots of good tips, mostly for the pwME who are able to be active about the house or more. (Not for severely affected. More for newly diagnosed and people getting their heads around pacing.)

I realised that I’ve been doing a lot of the tips already and it reminded me to restart others (smoothies in summer etc).

I took some notes on one of the sections as I think this whole video could do with some cliff-notes.

[Not going to post detailed notes right now as am running out of editing capacity. Hopefully will get back to it but I might not (I am currently doing a phase of just letting things drop rather than building up more and more on my to do list - I alternate this with the “just say no” approach advocated on the video which is my new normal but, I find, feels stifling if I don’t also take breaks from being disciplined).]

There’s a slide for their summary of one section on their website:
https://workwellfoundation.org/wp-content/uploads/2020/09/Top-Energy-Saving-Tips.pdf

They also covered:
energy systems (their idea that anerobic systems are working fine but are for high activity so can take a toll whereas aerobic systems are impaired so even though it’s not a high energy activity it might still get worn out),
identifying your own pattern (the slide strongly implies that we all have the same pattern for PEM symptoms but from what she then goes on to say it sounds like that’s just a starting point to consider when figuring out your own),
knowing what complete proactive rest really means and scheduling it in (even when you don’t feel like it),
Posture (both considering if being upright, sitting or standing, is using up energy that you want for other things irrespective of diagnosed POTS but also considering if your posture is energy sapping too: get your screen at a good height etc so you can maintain better posture in your regular positions).


(Posting without reviewing what I’ve written. Very happy to edit or remove if this proves not to be the helpful notes I started out to make)

 

Thanks for posting the link, Gecko. Carolyn (did I catch her name correctly?) was a great facilitator.

I have always found talks by folks from Workwell to be refreshing. They focus on effective energy conservation and pacing strategies rather than strategies to push more or try to increase fitness. They also stress the importance of carefully planning activity to avoid PEM. Some of the tips are pretty basic and intuitive, but I guess do bear repeating.

I was surprised when listening to some of the Dysautonomia International conference talks last week because many researchers mentioned the importance of an exercise plan to combat deconditioning. That advice has not helped me regain fitness or reduce symptoms (even if I wish it could).

I'm glad to see a different set of recommendations from the Workwell group.

 

@Gecko my thanks to all involved. Some useful pointers and reminders in that.