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

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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).

 

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).

 

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

 

Thank you @Ravn for your guidance and input into the content for this presentation.

 

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".

 

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

 

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.

 

Phew! Having been outed 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

 

From last night.

 

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

 

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

 

@RoseE

 

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.