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
 
PhysiosforME said:
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
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Wow, so much good work you're doing! Thank you!
 
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
 
PhysiosforME said:
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
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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.
 
Daisymay said:
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.
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Good point - thank you. adding it to the list
 
PhysiosforME said:
Good point - thank you. adding it to the list
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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
On Saturday 6 Feb 2021, Physios for ME had the pleasure of (virtually) meeting “Long Covid Physio”, a global peer support and advocacy group for physiotherapists and support workers living with Long Covid.

Long Covid Physio was founded in November 2020 by Darren Brown, a physiotherapist who shared his own story of Long Covid with us back in October. The primary reason for Long Covid Physio forming was peer support for physiotherapists and support workers who were struggling with Long Covid, in particular the symptoms associated with Post Viral Fatigue Syndrome. For many it was a steep learning curve to realise that the typical rehabilitative approach of graded exercise was not going to help them, and could result in episodic disability.
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https://www.physiosforme.com/post/p...-covid-physio?postId=60210fa29d41ed00183804cd
 
Andy said:
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Thanks for sharing the post about our book news

MSEsperanza said:
About the publisher:

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

o_O

Publisher's website:
https://uk.singingdragon.com/
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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.
 
PhysiosforME said:
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.
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Given how little is known, I'm sure you will be careful not to overstate it. As far as I can see from all the research we've been following, the 2 day CPET seems to be all we can be fairly sure shows something.

Thank you for your work. Good luck with the book.
 
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