Physios for ME

Sadly our referral was for GET. Physio was nice but simply did not have a clue. Completely unrealistic prognosis and conflation with chronic fatigue. No knowledge of OI, low blood volume, comorbidities.
I really hope that you can turn things around.

My daughter would benefit hugely from selective physio, but engagement is now as probable as the artic ice becoming permanent again.

Education from peers is key. It would be great to think that this could be addressed quickly at national level CPD module?

 

@PhysiosforME this is an excellent idea. I am currently seeing a physio for because I have EDS, he has tried to be very understanding of my ME diagnosis and has read up on bits and pieces. He maybe interested in learning more from you. Would that be ok to tell him if he wants to he can get in contact and find out more?

 

I love this - hearing that a fellow colleague is trying to find out more! Yes of course please do put him in touch. physiotherapyforme@gmail.com is our email address or @PhysiosforME on twitter My name is Michelle if you want to let him know you've heard from me

 

Sorry you didn't have a great experience of physio so far, that's what we hope to change. We're looking at education for both students and for qualified physios.
One of us is a physiotherapy lecturer so her expertise and understanding of the education system will be really useful.

 

That sounds great @PhysiosforME

I would love to be able to just give it a try, but once some physio labels you as unwilling to do the necessary work or worse, it can be really hard to shake that label & being reliant on benefits & no doctor who really knows me well at all, its a risk i cant take.

Another thing that would be massively, massively helpful imo, over the coming months/years, is if you could put together a list of physios & where they work, who are at least of the biomedical persuasion, so at least we could feel safe approaching them. I'd jump at the chance to see someone for my hip, if i could be assured that i would at least be safe from having unhelpful nonsense put in my notes, or being made to feel lazy/delusional/whatever. I honestly could not take another derision & contempt filled medical consult, i'd rather live with the pain.
The effectiveness of treatment is a secondary consideration to being safe, for me at least.

 

I agree this is a huge issue and barrier. The last referral I had was to a rheumatologist and at one point he said “well if you don’t WANT to do the exercises...” I set him straight best I could but it really upset me. He had nothing to offer me in terms of physio because I am largely housebound and perhaps also because he felt I had seen people before and not kept up with the exercises by choice? I try every day to move my body in safe ways when I can. The assumption that we don’t care enough to help ourselves is truly insulting.

 

no idea if this has been posted
Salford Royal NHS
Chronic Fatigue
Syndrome (CFS) /
Myalgic Encephalopathy
(ME) Physiotherapy

https://www.srft.nhs.uk/for-patients/patient-leaflets/a-z-dept/?categoryesctl1043533=1306

pdf
https://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=63752&type=full&servicetype=Inline

supposedly updated last year(?)