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When I'm really ill, I get very feverish but my temperature doesn't get to 'fever' level even if it increases a bit. But I can never tell if I'm sick or in really bad PEM so its very hard to know what's what.

Just found this paper and comment from looking up cGAS-STING off the back of this new paper by Paul Hwang's team. https://www.s4me.info/threads/mitochondrial-innate-immune-signaling-in-skeletal-muscle-adaptation-to-exercise-2025-ma-hwang-et-al.44595/ The conclusion speculates it could be...

To highlight this bit from the conclusion: 'For example, in disorders associated with immune and exercise tolerance abnormalities such as ME/CFS, it could be speculated that the innate immune activation caused by exercise stress may contribute to the clinical symptom of post-exertional malaise...

Again, if the evidence of immune and nervous system involvement is stronger by the end of the year perhaps they might be more amenable to persuasion. There is already the Zhang study...

Precicely. Perhaps if DecodeME etc does come through with some solid findings funding will be easier to secure. But it's just so unfair. We have to scrape and save and wait while they just pump out low quality papers.

I have just discovered 26m NOK is the equivalent of just under 2 million pounds. This is peanuts, especially when disease burden and prevalence are taken into account. What are these institutions playing at? I think either a big fundraising or lobbying effort by ME orgs would be appropriate...

This is so frustrating and opaque. I wonder if anything could persuade them this worthwhile.

A couple of questions from Scheibenbogens talk. 1. If this improvement from immunoadsorbtion is genuine, why would it not be an appropriate therapy for the severe or very severe in the absence of better drugs? 2. She says that she has seen very good improvement from CD19 depleting drugs in...

I remember how much hope I felt for RECOVER at first. It was announced at precicely the same time I became severe. Watching it flounder and bake in failure from the start was soul crushing.

I believe what I was actually thinking was maybe the RECOVER TLC trials could take pointers from DecodeME and LOCOME. And that way have much more chance of a successful trial. But let's be honest it may well end up being more paxlovid and brain training.

It's baffling. As JE said recently, why didn't they fund a GWAS? Instead we've got this monstrous lumbering buereucratic apparatus that almost seems designed not to find the answers and to waste as much money as possible. I believe they have a lot of different types of samples collected from...

I have only just seen this comment but this would absolutely 100% fit with what happened to me as a young man, and also explain the 'neuro-only' form of long covid that is observable in support groups.

Would it be worth reaching out to PrecisionLife and expressing some of our questions and concerns? Maybe invite them to come on here and discuss their work with us? Or might that be something better left until LOCOME publishes?

Agree with everything you say in your post, wanted to ask if you had heard these trials were already happening? I swear Sayoni Das said they would start after they had the locome results in a presentation i saw once.

Maybe it isn't constant PEM per se but there is always something holding me back and slowing down/disordering my movements now that was only present during my worst crashes when mild/moderate. Like gravity has been turned up or I'm wading through treacle. That's not PEM as such but it is...

Also appreciated Ryback's clarity, transparancy and fastidious approach, even if the lack of replication is a little disappointing. But as was said, it shows us where not to look.

I had the familiar experience of feeling a huge amount of hope when they talked about drug trials and my enthusiuam being somewhat dampened by coming on here and reading this thread :dead:. (of course this is part of what makes s4me so valuble!) Did anyone catch that they are planning to do...

The issue is that many patients are not well informed and while pacing up isn't as destructive as full GET it can still cause harm and deterioration. I have seen people harmed by these kinds of programs in LC groups. Of course the progress is welcome and cannot come soon enough but as you...

I wonder if they will say what these repurposed drugs are after DecodeME and LOCOME are published. It would be very good to have something that moves the needle a bit while we wait for the heavy hitting drugs, so its good to hear the trials are going faster than planned.

Seconded. But also with 48 and 72 hour measurements!