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I have received the following from AfME: I can't help contrasting the prompt acknowledgement and clear document outlining their procedures with the opaque and inordinately slow procedures of Cochrane.

I have added it.

I think energy management is an OK term mainly because it's a contrast to treatment, which was the old appoach. Nor is it rehabilitation, reenablement, an intervention etc. Management makes it clear it's not expected to lead to improvement, it's about giving the pwME information and support to...

Sadly there was one outlier, in the offensively inappropriate Observer/Guardian article by Alastair Miller, written about by David Tuller Article l Thread

My experience of CBT was similarly unhelpful. The eagerness to tell people they are thinking wrong things and should think other allegedly more rational things is superficial, likely to be short lived, and potentially harmful.

Thanks again everyone, I've got over it. You know how we often think afterwards of something we wish we'd said in a difficult situation. I thought when I woke up this morning that I would have liked to say: "Thank you so much, Professor Greenhalgh, for providing me with a new experience to...

I think there is a huge problem with trying to make analogies between computers and living cells and organisms. There must be many orders of magnitude greater complexity in the molecular, organelle, cell, tissue, organ, organism interactions in living organisms than in computers. One thing I...

But haemoglobin is inside red blood cells which in turn are inside capillaries. There is no way I can see that haemoglobin has meaningful proximity to the muscle cell wall for such an active removal process. As far as I can see the 'demand' comes in the form of simple osmosis, ie diffusion...

PEM involves, as Jo says, significant increase in symptoms. It also includes significant reduction in the ability to function. If you imagine the feeling when you have a nasty bout of influenza and feel to ill and weak to get out of bed, that's how my PEM affects me. I have no idea whether...

I have been looking for relevant articles to learn more about the myoglobin and oxygen getting from blood into cells. So far I've found these, both from the NIH library: Biochemistry, Myoglobin Trey Vanek; Arpan Kohli. Author Information and Affiliations Last Update: July 17, 2023. This makes...

Direct link to the article. https://www.theguardian.com/wellness/2024/apr/30/cbt-cognitive-behavioral-therapy-ocd

Thanks, @bobbler.

For the record and so as not to take this thread further off topic, I have posted the whole of my conversation with Greenhalgh on Bluesky here: Trisha Greenhalgh on ME/CFS and Long Covid

A reaction to Prof Trish Greenhalgh ackowledging that PEM is not deconditioning and LC clinics are using pacing not GET. See this thread: Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative, 2024, Darbyshire, Greenhalgh+ I want on...

I agree. I wish the NHS would understand that. Any chance of the government delivery plan recommending that, or even mandating it? But it would also require there to be doctors interested and willing to learn about ME/CFS and not get caught up in BPS or quackery.

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.