UK: Physios for ME

Thank you @Andy for sharing the news about our student podcast and our poster success.

Not sure which I am most excited about - the physio students were amazing with their questions and there was a lot of positive feedback on twitter which gives me hope for the future!

Plus getting two posters at the world congress is also very exciting - it was supposed to be in Dubai but is now online!

And then they say good things come in threes, found out today that the Royal College of Paediatrics and Child Health have taken down their elearning module which was totally based on the deconditioning theory. I messaged them and got a very standoff response saying they would update in April when the new NICE guidance was available but they seem to have removed it already! Taking that as success https://twitter.com/user/status/1353290364216553479

 

Wow, so much good work you're doing! Thank you!

 

A comment from a GP after reading @Jonathan Edwards testimony to NICE

"I’m pondering what immense additional suffering has been added to the burden of sufferers by the approach of the health care world.
A gaping hole, and worse-wrong teaching, for medical schools to start to address."

 

This week we had our monthly catch up - our focus for the next couple of months is preparing for the publication of the NICE guidance to make sure we have as much information to support physios with their implementation. We also caught up with Long Covid Physio - it's great having them as an ally who can take on the long covid challenges leaving us to be able to focus on ME.

Plus we need to produce our posters for world congress - so lots going on behind the scenes

 

Thank you so very much for all your work!

Will you be including information on consent, to ensure they are aware it is their legal obligation to ensure patients are fully informed of any material risks etc etc?

I bring this up as a way to protect patients from anyone who may either want to stick to the status quo (CBT/GET, patients wrongly thinking they are ill etc) in spite of the new guidelines or for any physio who may be pressurised by superiors to stick to CBT/GET and variations against their better judgement.

 

Good point - thank you. adding it to the list

 

Thanks, and if I may add, if you are in touch with Forward ME, any other ME charities and MPs could you please bring the issue of consent up as I think ensuring fully informed consent could be a really pivotal tool to enforcing the new guidelines and the re-education of medics happens as soon as possible.

The Royal Colleges and professional bodies need to quickly be made aware of the new guidelines and the legal implications for their members (or even their institutions) if their members fail to adhere to the new guidelines (through ignorance or design) and therefore fail to fully inform patients.

Edit: sorry I hope you get the gist, not very coherent!

 

Physios for ME and Long Covid Physio

https://www.physiosforme.com/post/p...-covid-physio?postId=60210fa29d41ed00183804cd

 

you beat me to it again!!!

 

Well done @PhysiosforME and Long Covid Physio.

 

https://twitter.com/user/status/1380459895493951494
We've got two posters at World Physio Congress this weekend - we hope to share the posters with audio files and transcripts after the conference but here is a sneak preview

 

And here is the second one
https://twitter.com/user/status/1380452916646060034

 

https://twitter.com/user/status/1398353061513510912

 

https://twitter.com/user/status/1399622307044376576


Study discussed on the forum here, Hand grip strength and fatigability: correlation with clinical parameters and diagnostic suitability in ME/CFS: 2021 Jakel,Scheibenbogen et al

 

https://twitter.com/user/status/1409410265213452288

 

About the publisher:

"Leading publisher in acupuncture, Chinese medicine, yoga & yoga therapy, complementary health and more."



Publisher's website:
https://uk.singingdragon.com/

 

Thanks for sharing the post about our book news

We deliberated long and hard before making the decision to go ahead but decided it was too good an opportunity to help achieve our aim of educating physiotherapists about ME.

We are aiming to provide information about the known pathophysiology of ME and to discuss how it is directly relevant to a physiotherapist's clinical practice.

The publisher is wanting to branch out into more academic/medical text books and we're one of their first avenues into this. And just to reassure you that we have control on content.