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Reminds my why I usually avoid posting on Twitter and now bluesky. Back to the safety of S4ME.

Well that went well (not). Greenhalgh has just accused me of trolling her. I'm feeling surprisingly upset.

I fear it will be a jumble of individual doctors' idiosyncratic views, rather than a useful contribution to knowledge about ME/CFS.

I have just listened. That was a really powerful program. The callers spoke so eloquently about gaslighting by clinicians and in many cases family and friends, loneliness, appalling treatment, doctors saying to their face that ME isn't a real disease and so on. The presenter was really good...

I don't think the problem is the profession. The problem is not understanding ME/CFS and PEM. Look at Physios for ME. They get it.

Peter Gladwell is a physiotherapist. His PhD was on using TENS for pain. I think his clinical experience is pain and fatigue, with ME/CFS included.

The PACE trial manuals describe the different arms of the trial as: Simple Non-incremental Adaptive Pacing Therapy (APT) Complex Incremental Pacing /Cognitive Behavioural Therapy (CBT) Simple Incremental Pacing /Graded Exercise Therapy/ (GET)...

Exactly. Very clearly stated.

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...

Hello @hellytheelephant, it's lovely to hear from you again, and read your musings on your life. :hug:

A really excellent study, @ME/CFS Skeptic, thank you.

Letter sent here: Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

Did the replication attempts do the same experiments to look at the same feature of NK cells?

(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/...

Done