UK: Physios for ME

Thank you for sharing all these links - and for expressing your concerns. We have learnt huge amounts from people with ME and continue to do so. Really appreciate you raising concerns so we can try our best to use this to inform our work

 

https://content.iospress.com/articles/work/wor203168
https://www.s4me.info/threads/post-...from-healthy-controls-2020-mateo-et-al.15620/

this article by Mateo et al from 2020 is an interesting one regarding PEM.
Immediately post tests ME subjects reported more symptoms with cognitive dysfunction and decrease in function potentially indicating the presence of PEM (none of the controls reported these symptoms)
During the seven days post CPET testing, ME subjects reported 4+-3 symptoms whereas none were reported by controls.

 

Could you use your professional clout to suggest " Monitored pacing guidance" to LOCOMOTION team instead of APT?

Words matter!

 

Please excuse my ignorance / dodgy memory but who are they?

 

May be useful for your book.

https://academic.oup.com/hmg/article/29/R1/R117/5879704

 

Research study funded by NIHR.

 

The two following posts have been moved from this thread.
https://twitter.com/user/status/1436314375418228743

 

Horrible. Just when you think your contempt for certain people can't grow any further. Must be terrible for the physio in question too, to be gaslighted in such a way.

*edit* I wasn't reading correctly. It was an account of a parent with M.E. told by this physio. But afflicted by another "professional".

 

Physio for ME has launched An international survey of experiences and attitudes towards Pacing using a heart rate monitor for people with ME/CFS

https://twitter.com/user/status/1441453570214305793

 

Browsing the web for ME/CFS related things, I came across this mumsnet thread ...

https://www.mumsnet.com/Talk/am_i_b...ost-viral-Fatigue-GF-help-me-get-help-from-GP

Really heartened to see that two helpful posts by "Zotter" include links to @PhysiosforME's website as supporting material. Your good words are making a difference!

 

@PhysiosforME

I have downloaded the information document and read it. There are two links embedded but neither work for me. I can't simply copy and paste the text into.my browser because of the formatting of the document.

I am using a kindle fire tablet.

 

@PhysiosforME

don't know if you are aware of this group
https://purephysiotherapy.co.uk/

they've posted a video on Youtube

"Find out more about ME chronic fatigue, what causes it, common symptoms and how to treat it"

Code:

https://www.youtube.com/watch?v=neRMbeQn4_s

 

Thank you for tagging us - will have a watch

 

Physios for ME celebrate our three year anniversary!

This month Physios for ME celebrate our third year anniversary. Yet again we cannot believe how much we have been able to achieve and we are so grateful to the ME community for their continued support, as well as the researchers and professionals we have made links with.

More at https://www.physiosforme.com/post/physios-for-me-celebrate-our-three-year-anniversary

 

Awesome @PhysiosforME you are doing fantastic work, we are all so grateful to you.
Your consistently humble recognition of how much we can learn from each other (despite your wealth of knowledge), & your collaborative attitudes, also really stand out to me - an example of how working together can really pay off.

You're a credit to yourselves and to our community. Thank you so much

You rock!