Here's the PICF. It contains some language that will make some people concerned. And some stuff that looks good.
The language some people might be concerned about: " It will also help inform people with ME/CFS what levels of activity might decrease the risk of PEM and guide doctors in designing...
I contacted them earlier in the year but then backed out of actually doing it as I was in a downward spiral at the time and worried about gettin worse. Here's the email they sent me. I think the research objective looks good and I should follow up with them!
Hi ,
Thank you for completing the...
Pleased to hear this stands up because it's one of those things where I wasn't sure if it was folklore. I've heard it repeated a lot but also seen it questioned in these pages.
A solid finding is a relief.
I'm just hearing about paneth cells and they seem interesting. Here's two papers. First a background primer on how they maintain intestinal homeostasis. Those of us who seem to be in constant dysbiosis might wonder if our paneth cells are working properly.
EMBO Mol Med. 2023 Feb; 15(2): e16427...
What was in common between Younger's video above and Cort's write-up is emphasis on the increased volume of research now (and increased number of researchers) and the collaborative approach.
Younger says some good basic research will come out soon. I suspect his mention of subgroups is a way of...
This is a blogpost by an anatomy professor. I appreciate how he's not defensive about the fact that much is still to be known in medicine, rather he is excited and frustrated to get on with finding things out.
https://svpow.com/2024/09/07/were-not-going-to-run-out-of-new-anatomy-anytime-soon/
We’re not going to run out of new anatomy anytime soon
September 7, 2024
If you are interested in making anatomical discoveries, good! Because relative to a single human life, the work to be done is...
I've just started reading this and there's a subtlety in it i appreciate. They distinguish exercise intolerance from PEM:
Importantly, PEM is clinically often accompanied by fatigue and profound exercise intolerance. Yet, while being pathogenically connected, they constitute separate entities...
No difference visible in Hanson's four-timepoint metabolite study for 2-hydroxybutyrate, but a group difference for 2s-3r dihodroxybutyrate that kept increasing the more exercise the particpants did, until healthy control had more.
The above chart taken from my interactive webapp that gives...
Stress granules are confusing. The only thing I know for sure is they need a rebrand, ought to be named something latinate and technical to get respect!
Phair and Davis are interested in the Jak-Stat inhibitor that de Meirlier uses, Filgotinib. They think it can turn off innate immune reactions and therefore address some of the fundamental issues in me/cfs.
I admit I'm attracted to the idea that innate immunity is stuck on. It is plausible...
On Reddit someone linked to a Robert Phair comment on Health Rising where he indicates the Australian patient Ron references was corresponding with him, Robert Phair. The patient had gone to Japan to seek Filgotinib, and got better within three days.
IN this webinar Phair also cites an anecdote...
This is the second potentially relevant sickle cell paper I've sen this week, I posted the other one here: https://www.s4me.info/threads/less-deformable-erythrocyte-subpopulations-biomechanically-induce-endothelial-inflammation-in-sickle-cell-disease-caruso-et-al-2024.39940/#post-550623
I've...
NEGATIVE TAKE
This is a hypothesis paper. I made a comment in another thread recently about how easy it is to make up credible theories of mecfs. They're easy to generate. Useful, but cheap to make. What we really need is to match the rate of hypothesis generation with high-speed falsification...
I don't think this is likely to be a primary cause of trouble in me/cfs. But, there were those provisional findings from Stanford that RBC deformability was reduced in mecfs. If that is true - and i'm not sure what the status of replication of that is - it could be in the mix of reasons...
Emory University School of Medicine, Atlanta, Georgia, United States.
Full text links
. 2024 Aug 23
DOI: 10.1182/blood.2024024608
Abstract
Sickle cell disease (SCD) is canonically characterized by reduced red blood cell (RBC) deformability leading to microvascular obstruction and...
I'm not 100% convinced that the term boom and bust is pejorative; to me it's merely one way of describing pem. And I'm for anything that centres pem in discussion of me/cfs.
My experience of hanging out in forums and reading papers relentlessly for the last 7 years or so is this:
Credible, plausible theories of mecfs, that fit the existing evidence and explain the symptoms, are as abundant as grains of sand.
The existing evidence is spotty, the symptoms are...
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