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What I'm catching is that funding and coordinating structures are good, actually? Is there some other subterranean power struggle going on in the UK

One might expect that this is the sort of thing that a well-funded system would fix. The papers suggest that the hub model will be based on a model the UK uses for mental health. This is an excerpt from the Brain and genomics Hub of that mental health model and it shows that one of their roles...

Structures that can funnel funding and nurture careers could overcome major barriers. From what I can see this is considered best practice. Some money goes into overheads, but the result is greater continuity stability and ability to get things done. I'd be interested to hear from current...

I was excited there might be more papers forthcoming but it looks like this is a retrospective study of data collected at a clinic. Which is why there's so many patients (127) relative to controls (21). Honestly I'm impressed by it. incidentally this is the tool they used: Bodyguard 3...

To me this paper seems to really show something. Big sample, clear results. HRV is depressed for a long time after exercise in patients but not controls. And more strongly depressed in more severe patients. Blue dots are the time when hrv shows a significant rise from baseline; it takes...

This study uses a mouse model that might actually not be too bad. It has not just lung issues but immune, gut and microglia too. I'm really excited about using animal models for me/cfs because I think we desperately need to ramp up how much data we have to get some leads on etiology. Humans are...

can we just call each others posts bullshit now? brb going to drop this format in a few threads. :P

Just to let you know many things you mentioned not for the last two points is my experience too. Arms much weaker than legs, POTS, timing, need for carbs, etc. Although I'm mild. I will say that I can transition carefully off carbs and onto keto if I don't exert in the transiton phase, and then...

I quit coffee once and the withdrawal gave me full body cramps and reduced my fitness. Took me a few weeks to get back to my baseline (which was good, I was in a decent remission at the time). Never again! I corresponded with Chris Armstrong about it at one point and he was interested that...

I had a really clear period in my illness where I always had the very distinct 24 hour gap from exercise (which made me feel great) to PEM start, but more recently it's been cloudier and more variable as I've got deeper into the illness and my fitness is worse, I'm less ultra-mild, my supplement...

I've been using paracetamol to reduce PEM for about 10+ years, I never see anyone else talking about it though! I started using it regularly during PEM because it sharply improves my brain fog. I go from feeling like I'm in a fever-dream to being somewhat more normal. (I don't experience pain...

My son has ASD and this describes him to a tee: "compensatory expansion in other brain regions". Age 5, he can barely string a sentence together but reads chapter books and knows a surprising amount about prime numbers.

100% true this is one of the things people criticised the PACE trial for. I still look forward to their final results but view them with a dollop of extra skepticism. My view is the likely effect is modest, most trial participants will never hear about it. The study looks set to go on to stage...

I genuinely like to think about this. Without mecfs I might have been in a serious bike crash, would probably have worn out the meniscus in my knees from running. But the biggest upside is probably that I had to quit drinking. I was probably on track to make a lot of bad choices and destroy my...

This scientific paper is one of the ones that comes with a reference section, happily. 15. C. G. Boer, D. Radjabzadeh, C. Medina-Gomez, S. Garmaeva, D. Schiphof, P. Arp, T. Koet, A. Kurilshikov, J. Fu, M. A. Ikram, S. Bierma-Zeinstra, A. G. Uitterlinden, R. Kraaij, A. Zhernakova, J. B. J. van...

I think a serpentine monster might have brought it up from the bottom of a very cold lake, and disappeared again before anyone had a chance to take more than a blurry photo. ;) Study is out of Scotland.

Just want to pop this poster I came across here, @DMissa you might enjoy this. It's blurry but the sumary is that the first 40 people in the big Rapamycin trial were enough to generate statsitical significant positive effects. Just as an anecdote: The times I've been able to maintain an...

Today on reddit I found a blurry poster that apparnetly reports preliminary findings from the Avik Roy, Maureen Hanson, Gottschalk Rapamycin study. They've put 40 people through their 3-month study of weekly rapamycin dosing and the preliminary results are good. In the charts in the middle you...

Just to clarify for anyone else, like me, feeling a bit confused, Nirmatrelvir is the drug name of paxlovid (which is a brand name). Ritonavir is an anti-HIV drug. Why was it was given as part of both sides of the study?

They only recently discovered the brain's drainage system, a bunch of tubes that has been labelled the glymphatic system. Its function correlates with cerebral blood flow. If we don't get enough blood into the brain, we can't get the rubbish out of there. Cerebral blood flow is very much...