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

[Ravn]

Excellent news. Thanks for pushing this @Hutan

 

[Hutan]

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 Canterbury Health Pathways team has let me know that they will inform teams in other regions about the webinar. Probably wouldn't hurt to enquire if you live in a region where HP is used.

 

[Hutan]

More acclaim for this video:
Suggestions of info to send a naturopath that sees a lot of ME patients and is also is educating other naturopath students?

 

[SNT Gatchaman]

I've had very positive feedback from a Mum of a teen after I recommended Dr Cathy Ferguson, who happens to be local for this family. Even if there aren't specific treatments available to us yet, there is most definitely sensible advice to avoid worsening and optimise the potential for natural recovery. Brava Cathy!

 

[Amw66]

This is a great resource . For newly affected it will be priceless .
Thanks to all involved , information such as this really will make a difference .

 

[obeat]

I wrote to a physio (who treated my mum) about post exertional malaise and included this link.
He replied

That sounds like a good subject for our next inservice, so will disseminate to our team.

 

[RoseE]

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.

Please feel free to send suggested changes to m.e.awareness.nz@gmail.com or to ask for a copy of the powerpoint. We are happy for others to use the powerpoint for their own use.

 

[Hutan]

I want to highlight this video that was originally posted on the NZ news thread by @Ravn. Dr Cathy Stephenson features. I didn't get around to listening to it at the time. It's a Goodfellow podcast, which is weird given the atrocious recent Goodfellow 'CFS/ME' MedCase document by Bruce Arroll.

https://www.goodfellowunit.org/podcast/myalgic-encephalomyelitiscfs

NZ GP education podcast with focus on young people. About 40 mins. Apparently it's been edited down to that length so it's not as comprehensive as it could have been, much to the disappointment of the speakers.

Still, the podcast is well done overall despite some gaps caused by the editing. At any rate, the main function of the podcast is to encourage GPs to take their patients seriously, advocate for them to get access to any support services they're entitled to, and to make use of sources like NZ Health Pathways & patient orgs, the CDC, etc. for more comprehensive information when treating a pwME. The podcast achieves this well, I think - or at least I hope it has this effect on any listening doctors. The challenge may be to get GPs to listen to it in the first place.

I think teenager Noah's testimony on how the disease affects his life will resonate with younger members here, it's very moving.

His mother Rose puts into words some of the emotions and challenges parents of ill children experience. Those of you who are parents may recognise some of these.

The GP Cathy's sections appear particularly truncated to me but hopefully listeners click through on the ME Awareness link on the page because there they can find a recording of a previous, more comprehensive presentation by Cathy and also a copy of an excellent NZ Doctor article she and Rose co-authored.
https://www.goodfellowunit.org/podcast/myalgic-encephalomyelitiscfs

As Ravn says, it is well done, and there is a very moving section by Noah, a 16 year old boy. Articulate and sensible contributions from Rose Silvester also. I think it works well as a resource for doctors.