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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...

I love when this sort of step forward happens in basic science, allowing us to see what is happening in cells at a basic level. I bet some assumptions get overturned! For us, I bet there's many uses. One occurs to me: This may be a way to test the purinergic signalling theory (atp is a...

A clincial trial on glycocalyx repair is starting soon, by Klimas.

Just hooking onto this most recent mention of the glycocalyx. Was watching the Nancy klimas talk from IIMEC 2024, and she discusses the glycocalyx, a structure I'd never before heard of and which is only rarely mentioned in these pages. They are running a clinical trial on a substance that is...

It does seem different although I think technically his finding is bh4 as a % of total biopterin rather than absolute levels. His work is also n=1 and the model patient is who you think. Ron says he gave Whitney some synthetic BH2 which made this ratio even lower and Whitney felt much worse.

Fascinating story. Most people are interested in the power angle, who can shut down an investigation. And that's important. But what I'm interested in is the mention of prion disease. Prions are amino acids that can make other amino acids take on their shape. In essence they are contagious...

This is pretty amazing stuff, and matches my sense, as I go through my early 40s, that everything is going downhill fast!

This. The Hwang paper does not suggest a genetic cause for elevated wasf3. It suggests it is downstream of endoplasmic reticulum (ER) stress. Perhaps there's a genetic reason for the ER stress but I wouldn't expect to find a direct wasf3 genetic issue. Here's a few anonymous samples they...

It's all just in the original paper. They built a transgenic mouse with extra copies of wasf3 and found it was crap at running. tbh my memory was that they used tudca and salubrinal on the mice but actually those drugs were used on patient cells in vitro (as seen in figure below). My guess is...

This looked exciting but I watched the corresponding segment and it seems to be that bh4 is 39% in a single mecfs patient, and Ron implies it's a blood relation of his. So sample size not big yet! The part where teams are genetically engineering zebra fish to overuse the itaconate shunt is...

Just to add a positive note.:nailbiting: I think this study is awesome. It validates, in an enormous cohort, that you can be sick as hell even if all the standard normal blood tests say you're fine. 1. It extinguishes the argument that you must be fine because the blood tests says so. 2. It...

Creating a baseline of data on what healthy and unhealthy bodies do under exercise is going to be really useful. The timeline they have there is maybe not long enough to capture PEM. But that doesn't mean differences won't be present in the early phases. Hanson's data seems to suggest that...

The just world fallacy goes like this: people who get sick are the ones who, at some subconscious level, want to. it's an extremely comforting pattern of thinking for the healthy and it will never go away.

I'm posting this one because I've never seen hypoxia responses linked to circadian issues before. But they are, the paper claims, linked. There's a mystery in mecfs which perhaps this could shed some light on, and that is that people report feeling better at different times of day. The most...