UK: Physios for ME

Wow! Thanks so very much for all you're doing and for being the roll model for these other groups.

 

https://twitter.com/user/status/1299730458251612161

 

Great letter @PhysiosforME

 

Thanks for sharing - I have been on holiday so only just back on line!

 

I don't believe this has been shared at the forum yet?

https://twitter.com/user/status/1301207227441668096

 

We've got a new tube channel https://www.youtube.com/channel/UCLw_WOa25bySRh5F9ASaSXA and have just posted the first part of a two part podcast on heart rate monitoring

https://www.youtube.com/watch?v=1czIhtH9rjM

We were lucky enough to be joined by Todd Davenport from Workwell and Sue Jackson who you may know writes a lot on her experience of living with ME

If there are any subjects you'd like us to cover on a future podcast, please let us know. Keen to cover topics of interest

 

https://twitter.com/user/status/1304458711415640065

 

As Autumn is back to school/education time, we are publishing a series of blogs on this subject
https://www.physiosforme.com/post/back-to-school-considerations-for-young-people-with-me this is the first one which we hope might provide some ideas and advice for children/young people with ME.

Then we feel very privileged to have two amazing guest bloggers who have both written amazing pieces for us about their experiences: Alex https://www.physiosforme.com/post/me-education-alex-s-story and Sian https://www.physiosforme.com/post/me-education-sian-s-story

I am so proud of these two young people for describing their experiences so eloquently (PS they aren't even my kids!)

We've got one more blog to come on the subject of education then will be busy on the other things we have planned (more podcasts to come very soon)

 

Great blog pieces and kudos to the authors.
I have posted on members only thread as this generalisation sadly does not reflect potential provision outwith England.

 

Code:

https://twitter.com/ClagueNjc36/status/1313506163695202304

https://twitter.com/user/status/1313506163695202304

 

We found out some positive news today that we wanted to share.
The Health Education England e-learning resource for Covid recovery and rehabilitation https://www.e-lfh.org.uk/programmes/covid-19-recovery-and-rehabilitation/ has reference to ME and also provides a link to our website in the further reading section.
We're quite pleased with this as reference to ME in a NHS e-learning module feels like progress. Still more to do but a step in the right direction!

 

Well done @PhysiosforME. You are making a huge difference.

 

I really hope that people pay attention to you widely! I'm very concerned that we're going through a mass-ME event with Covid and that a lot of people's health is going to be avoidably and severely damaged in the long term by clinicians' attempts to 'rehabilitate' them out of it.

 

Just flagging a podcast from Rachael Moses who is a pretty influential physio leader. She's interviewing physios with long covid and it is quite a long podcast (I've only got through the first half hour so far) but they have all acknowledged that their traditional approach of exercise isn't the right one in long covid.

Rachael highlighted the need for physios to expand our knowledge in this area and the need to know what to do differently and gave @PhysiosforME a name check together with our website for resources. Having physios (who aren't from Physios for ME) saying openly that CBT and GET aren't the answer for everyone feels like massive progress - I know it was related to Long Covid but the fact physios are actually discussing it is progress I think

https://twitter.com/user/status/1325385023487434752

 

https://twitter.com/user/status/1327282253752397825

Today we presented our poster on the experience of physiotherapy of people with ME at the national physiotherapy conference (which is virtual this year due to covid)
Not very many people visited our poster whilst we were there but it is a start - it was lunchtime and people may well have come and looked at other times.
Back again tomorrow

 

@PhysiosforME if it's not too much to ask, can your organization submit feedback to NICE about the draft guideline? What would be useful is to signal to NICE that at least some physiotherapists accept it. This will hopefully make it more difficult for the GET proponents to revert the positive changes.

What's your perception of how it has been received among physios?

The guidelines say no to "rigid fixed increments" GET for the purpose of treating ME but this is somewhat ambiguous because it allows for example the possibility of GET that is presented as flexible increments for increasing physical function. What do you think about this?

 

also it says

supervised programme?

 

Yes we are registered stakeholders in the guidance review process and so most definitely will be commenting. Still working through it to make sure we don't miss anything.

Agree about the ambiguity- there's lots to be positive about in the draft but also some areas that could do with a bit of tightening up!!