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We've made a new thread for the discussion about TBI and ME/CFS: Traumatic brain injury - similarities with and differences to ME/CFS, including PEM

I'd argue that it's the stigma of the disease that has been the biggest hurdle to activism, not the debility. Think about people like Michael J Fox for Parkinsons. He had symptoms that made it harder for him to advocate. But with ME/CFS, high profile people with the disease often don't want...

A new paper Italian intersociety consensus on management of long covid in children, 2022, Esposito et al

USA: News from #MEActionLink to an article on cognitive dysfunction by MEAction. Includes descriptions and tips.

USA: News from #MEAction Link to an article on cognitive dysfunction by MEAction.

The sad fact is that the people who promote these sorts of ideas aren't very very stupid. If they were very very stupid, they wouldn't be such a problem. They are just rather susceptible to normal human desires to feel superior to others, and to feel that they are protected against the...

https://www.healthrising.org/blog/2020/06/02/chronic-fatigue-syndrome-lyme-phelix-bacteriophage/ Dominic Stanculescu posted a blog about this test on Health Rising in June 2020. There are a lot of comments. And a 2021 Medscape article here: Phage-Targeting PCR Test Picks Up Early Lyme Disease

(For those wanting more information about that Phelix bacteriophage test, we have a thread on it: New Phage based test for borrelia)

It's possible to make a comment on the study - you just have to register. Clearly, we can't just sit back and wait for OMF to solve ME/CFS for us. I left this one: The authors rightly point out that ME/CFS has suffered from a lack of research investment. While speculation is therefore an...

A number of posts have been copied to The HANDI Working Group

The thread has been split to create a thread about the Handi Working Group in general: The HANDI Working Group

On the negative side, there's this.

Re the commercialation aspect: The project is a lot like the work of Paul Fisher's team, except that it is using muscle and brain cells derived from stem cells, rather than leukoblasts derived from leukocytes. My understanding is that independent people working in the field think this...

https://impact.deakin.edu.au/2021/08/new-research-to-explore-myalgic-encephalomyelitis-chronic-fatigue-syndrome/ So, one of the three studies funded by the NHMRC. I believe that, while there has been criticism of Paul Fisher's work with the leukocytes turned into leukoblasts in the grounds...

Yes, the only exception might be for people who are bedbound, where some carefully chosen exercise might help retain function and blood circulation. Oh, and maybe for those people who get a lot of pleasure out of swimming or lifting weights or whatever and have sufficient support that they...

Open Medicine Foundation (OMF) Dr Bergquist has been appointed Chief Medical Officer of OMF. More at the link.

Announcement from OMF Feb 2022: https://www.omf.ngo/new-changes-announced-for-omf/ Continuing the Research: New Changes for OMF Announced In an effort to continue the tremendous legacy of OMF’s Late Chief Medical Officer, Ronald G. Tompkins, MD, ScD, we would like to share new developments...

Open Medicine Foundation (OMF) So, this is not just another speculative paper from a researcher who doesn't matter. This represents the thinking of OMF's Chief Medical Officer, who will, presumably, have a significant say in what research is funded by OMF.

Just coming back to add the link: Perspective: Drawing on Findings From Critical Illness to Explain ME/CFS, 2022, Stanculescu, Bergquist

There's an awful lot to unpick in this paper. Taking one statement pretty much at random: I don't know that people with ME/CFS have issues with ACTH release - I had an ACTH stimulation test and it was fine. But, setting that aside for now, what's in this suggestion of adrenal atrophy in...