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Is it possible they have caught wind of the same developments JE has and are trying to accumulate enough 'evidence' to flood the zone with and drown e.g. news about DecodeME results out? Or am I overthinking things?

As in, AI will look at the most viewed articles/papers online to compile it's search results? If that's their move it's chilling. Honestly I've said this before and I'll say it again: the psychobehaviouralists behave like people who know their therapies don't work and are desperately trying to...

Don't forget 9/11 emergency responders/survivors.

Honestly I'd be much more offended if he had. At least he's not pretending to care about us while collecting his latest honour for throwing us to the wolves.

I agree, I feel like the UK MEA could redeem itself somewhat by reaching into it's coffers for this. OMF raise a lot of money too. You would think that this would be a priority for the community internationally. If it is discovered how to donate for those outside Norway I would be very...

I can certainly ask my Dad whether he's done one tomorrow.

Not that I'm aware! Do you mean a general one or one specific to psoriasis?

I don't have psoriasis but my Dad and sister both do!

Lipkins fundraiser has not done very well so far since the large donation that started it off, and I am concerned it is because the wording implies that they do not have any plans for clinical trials in the next five years. Under the section about what they planned to do with the next five years...

That sounds very frustrating, and I'm sorry it hasn't been fruitful so far. I hope that things change on that front as it sounds like a very worthwhile study. If there is anything we on the forum can do to help facilitate some progress, do let us know. Thanks for explaining further, that's...

Facinating - is there anything we can do to bring this hypothesis to the point where we can do a clinical trial? Or falsify it so we know we don't need to? Also, if those therapies are B cell depletion, does it follow that if it turns out Daratumumab works for ME/CFS perhaps non responders...

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.