UK: Physios for ME

MSEsperanza said:
Thank you for your reply @PhysiosforME .

And apologies for my unbalanced comment. I appreciate your work and the impact of it. My congratulations to your anniversary should have preceded my hint to my concerns about the details on which publisher will sell your book.

I just was really shocked when I had a look at the publisher's website which seems to be a depository for the promotion of fashionable non-evidenced treatments and trendy life-style myths.

That's OK as long as people don't conflate it with science. If it's sold as science though, that's exactly the sort of claims we need to debunk and push back when people try to impose them on the understanding of illnesses, in particular contested illnesses, and chronically ill people.



It's good that you have control on content but I'm afraid my concerns sill apply.

Now that there is more awareness for ME due to post covid syndromes these illnesses seem to present an emerging market for all kind of health care / wellness business people and if there is a chance to appear more science-based they will use it.

Also, I'd like to reiterate what others said regarding assumptions about the pathophysiology of ME.

See most recent forum discussion here:

Over which physiological abnormalities in ME/CFS is there a scientific consensus about? | Science for ME

https://www.s4me.info/threads/over-...scientific-consensus-about.20900/#post-349883

You might find Snow Leopard's comment on the 2 days CPET test particularly interesting.

https://www.s4me.info/threads/over-...scientific-consensus-about.20900/#post-350001

I'm sorry that I can't hide my concerns about these parts of the news.

Having said that, thanks for your important work and for engaging with us S4ME folks.
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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
 
Medfeb said:
The 2 day CPET studies - at least the ones m familiar with including two I was in as a control - also record symptoms at baseline, during the tests and in the days. So wouldn't that be sufficient to tell us something about PEM - at least PEM caused by physical exertion? Also, if I remember, a study looked at how the post-exertion symptom profiles changed over time.
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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.
 
Jan said:
I've no idea where to put this tweet from Physios for ME

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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".
 
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Thank you so much @PhysiosforME. It's wonderful to read of how much you have achieved over your first 3 years in educating your fellow professionals and in research, writing your book and keeping in close touch with the views of pwME as you do all of this. I look forward to reading the book and following the progress of your research.

You can be justly proud of what 4 individuals working together can achieve on behalf of a community of patients for whom such collaboration between professionals and patients has in the past been so fraught with problems. I hope this is a sign of better to come with other health professions too.
 
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 :heart:

You rock! :emoji_trophy:
 
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