UK: Physios for ME

Great feedback - thank you

 

Yet this is taught as if there is actual evidence for it. The relevant part of the IAPT therapist curriculum for CFS/ME states the following:

https://www.hee.nhs.uk/sites/default/files/documents/CBT LTC MUS curriculum.pdf

The 'theoretical understanding' underlying the general MUS model that IAPT therapist are expected to 'gain competence in' start at page 14 of the above document:

 

I hope all this info is being stored - very useful for any future litigation

 

I'm glad it's helpful.

 

@PhysiosforME Do you know if CSP has any information on PEM in its policy document on Covid19 rehabilitation? I've no energy to read the whole thing.

 

I just read through the website for @PhysiosforME , still got quite a bit to get through but wanted to say how wonderful it is, it’s making me cry (happy tears) to read it! (My excuse is I’m a bit emotional at the moment!).

to go on your physios page and to see:

“pacing
We recommend Symptom Contingent pacing:
pacing within energy limits

We do not recommend Quota Contingent pacing (gradual increases in activity)

Read More >

heart rate monitoring
Use of a Heart Rate Monitor to keep within threshold and avoid triggering Post Exertional Malaise

Read More >

what about exercise?
We do not recommend Graded Exercise Therapy

Read More >
Watch >

what else can i do?
ME is a complex
multi-system disease.

Physiotherapy will not "treat" the underlying disease mechanisms.

Physiotherapy techniques can help alleviate symptoms and improve quality of life.

Goals should be around management, not treatment“

I cannot describe in words How happy I am to see this, after my past experiences with physio therapy. I’ve been reflecting today on all the professionals I’ve seen, how desperate I’ve been to get better, how they kept telling me to increase (either quickly or slowly), always quota based, the aim was *always* to set goals and improve function. And in the back of my mind that thinking is always there, and I very often end up doing it because I always have this feeling that if I just, just, pushed myself a tiny bit, I would be able to do it - I would get better. But it doesn’t work that way.

We really need a team like you, PhysiosforME! How glad I am that you are here!

 

Thank you so much - lovely to read

 

Sadly no - but we are working behind the scenes on that! We just did a webinar for over 200 members of the CSP which will hopefully go live really soon as well.

 

It wasn't a deliberate intention to imply that although our preference is towards using ICC over other criteria as it seems to be one of the more robust out there - as ever, happy to learn more about any issues/problems with using it and/or any other alternatives so please do let us know any feedback.

 

It's hard to believe that we've only been running for one year, but yesterday saw the anniversary of our first ever meeting as an official group.

To celebrate our birthday we thought we'd recap on what we've achieved in the last 12 months
See our blog post as there's quite a long list! https://www.physiosforme.com/post/celebrating-our-12-month-anniversary

Thank you for all your help and support in the last year - it is very much appreciated

 

Thanks for the response.

Criteria is a thorny issue for some in the patient community. Some patients support particular criteria and can get quite passionate about it - sometimes too much so, in my opinion. Some of that discussion can be seen in this thread, which is probably worth a read, MEAction: "DEMYSTIFYING THE DIAGNOSTIC CRITERIA FOR ME AND RELATED DISEASE"

As part of that thread, a survey that MEAction conducted that received 22 responses from researchers and clinicians is linked to, which concludes

Direct link to that, https://www.meaction.net/2019/11/21/diagnostic-criteria-researchers-and-clinicians-survey-results/

 

Happy birthday! So much achieved in just one year. I'm always so impressed by your approach. Thanks for all you do!

 

Your group really is amazing @PhysiosforME, in the best every way. Huge thanks, huge congratulations, and keep up the tremendous work. You really are making a very positive difference for pwME I'm sure.

 

I know you're really busy.@ Ptsafetylearning is working on information for LongCovid, can you have any input?
@PhysiosforME

 

If you ask them to contact us via our email physiotherapyforME@gmail.com we will see what we can do

 

We've just done another webinar for physios - this time for physios in neurology. Pretty much every time we are getting really positive feedback so fingers crossed we are slowly getting the message out there. Not sure if you have seen but a group of OTs has set up a similar group "OTs for ME" and I think there is a "nurses for ME" group as well. We also know of some doctors discussing setting up Doctors for ME! It seems people like our approach!

 

Absolutely! If there is ever a Paramedics for ME, or Ambulance Crews for ME, then I'll feel like things are really rocking.