I don't seem to be able to post my reply on Bluesky directly.
https://bsky.app/profile/ozfish.bsky.social/post/3l2hhrztgl22t
Here's a copy:
I also made a post drawing her attention to the Cochrane exercise review, but that seems to have disappeared into the ether. I'm not very practiced at...
Why is she listening now when she and her chum Wessely haven't listened for 30 years? Could it be because some of their clinician friends and perhaps even family members have Long Covid.
The next step is to ask Greenhalgh if she will make it clear the same applies to ME/CFS, and take positive...
As I understand it The Chronic Collaboration was basically Steve Topple and his partner.
From MEpedia:
https://me-pedia.org/wiki/The_Chronic_Collaboration
The Chronic Collaboration was founded in August 2021 to advocate for improved treatment of chronically ill patients including people with...
Peter Gladwell is also on the IAG (independent advisory group) led by Hilda Bastian for the Cochrane Exercise therapy for ME/CFS new review. His influence in so many contexts is very worrying.
I think the boom and bust idea is wrong, as illustrated by the studies @ME/CFS Skeptic describes in this article which show that there is not an inherently different behaviour pattern practiced by pwME when not in PEM compared to healthy controls.
However, I don’t think that means the term...
(continued from previous post)
5. The sections on activities and limitations is both too long and inadequate
The lists provided as examples of activities that a pwME finds difficult and/or need help with are very odd, focused mostly on mild ME/CFS, for example listing details of types of...
I have just sent the following letter to AfME, signed by 15 forum members, including the 5 available committee members
To discuss the document and AfME's promotion of it, go to this thread:
https://www.s4me.info/threads/care-and-support-plan-template-free-to-download-action-for-me.39801/...
If anyone wants to add their signature to my letter to AfME about this document, please do so by 2pm tomorrow. You can read it on this members only thread.
Once I've sent it I'll post it on a public thread.
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