UK: Physios for ME

I doubt it needs one. I not sure it is even a formal publication.
Why put this on social media for goodness sake?
Oh dear.
I thought it was dross but didn’t realise it was basically a blog post.

This is exactly the problem, every little thing is promoted “we found the cause of ME”
spoiler alert - nobody has found the cause of ME, or if they have they haven’t tested, replicated and published a peer-reviewed quality paper on it.
 
This Gustavo Aguirre Chang guy has been churning out such preprints in high numbers on ResearchGate since the beginning of the covid pandemic. In the beginning he was even on the ivermectin train. I would ignore anything he posts there as they don't seem to be particularly scientific and seem mostly to just support any long covid / ME/CFS etc theories he has at that particular moment. I remember he also usually included a whole range of (even unrelated) diseases in his theories.
 
A cursory reading of the paper reveals it to be utterly laughable. So either she didn’t bother looking at the evidence before endorsing an earth-shattering claim about the nature of ME/CFS, or a PhD PT researcher and senior lecturer at University of Liverpool has basically no scientific discernment.

I’m being too harsh maybe, sorry. I’m sure Dr. Clague-Baker is a kind person and has helped pwME. I’m just so tired of our “experts” behaving incompetently.
 
A cursory reading of the paper reveals it to be utterly laughable. So either she didn’t bother looking at the evidence before endorsing an earth-shattering claim about the nature of ME/CFS, or a PhD PT researcher and senior lecturer at University of Liverpool has basically no scientific discernment.

I’m being too harsh maybe, sorry. I’m sure Dr. Clague-Baker is a kind person and has helped pwME. I’m just so tired of our “experts” behaving incompetently.
I think she’s going through something ever since she posted someone she knows is Very Severe and in/needing hospital. and then took the post down.
We all get desperate when it gets serious
 
Glad it was useful! Publishing something could be really useful I think although I’m not sure on the best approach. Getting involvement from patients could help. And thinking about what the core message is probably useful. There won’t be unanimous views amongst patients or professionals but I’m not sure presenting them all would be the right approach. And although having an explanation of different definitions of the word rehabilitation may be intellectually useful it can tbh feel a bit to some of us like explaining away a problem or telling us we don’t understand. I know that’s not at all the intention but I expect that would be the result if it made up a core of anything published. Providing an alternative approach rather would seem to be useful but I can see the difficulties.

Just on what word to use, I was thinking and brainstorming and words like support, maintain, prevention or possibly optimise came to mind. I did have some better notes but lost them! But it’s hard finding the right word, and I expect as with lots of things the more you say the more people can find something to disagree with.

Not sure if these thoughts are as useful. I can see the problem from my/our perspective quite clearly but not necessarily the solutuon. Even here on the forum while there’s largely agreement that rehabilitation is the wrong word there is a great deal of disagreement on the role of physiotherapists. I think many would like to help if you did try to publish something though, if would find input from the community useful.
With the recent article reopening the "rehabilitation" discussion, it might be time to think about this a bit more! I have a couple of weeks that are a bit full on with conferences and study session but will definitely think what/how this might pan out
 
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