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This is the second paper in the last week thats picked out HLA-DR

What kinds of evidence would be sufficient for a trial like that, in your opinion? And could your blood sample study possibly provide some?

Is this in ME/LC or other conditions? And what do you think of the idea of a Saphnelo pilot trial in MECFS? That's really frustrating. I know the Ely trial is at least monitoring whether people report PEM, even though the focus is neurological issues.

Last I heard was last year saying they wanted to start in the middle of this year. Afaik nothing since then.

Totally agreed on the letter. I was one of the people thanking you in the thread!

Thats troubling. I assume it is no longer in place?

This is frustrating though, because I don't think it's fair for pwME who spend their energy going through the science on here every day to be completely shut out just because we make people uncomfortable in our directness. I don't think much progress has been made by playing nicely.

Sounds like it might be worth doing then, if there are any researchers that could take it on.

It's not that the criticism she recieved was wrong so much as people came down on her like a ton of bricks as soon as she'd joined. And then she never returned. She strikes me as someone committed to the cause of getting progress for pwME, even if some of her views back then in terms of the...

No way in hell I'm getting my hopes up for this again after last time.

What sort of evidence would we need to justify a trial like this? Interferon signalling can be hard to get evidence of sometimes right? Could/should someone just go straight to setting up a theraputic experiment?

A review of the development of type 1 interferon antagonists in SLE https://pmc.ncbi.nlm.nih.gov/articles/PMC7924012/ Sounds like this is the only interferon antagonist on the market right now. https://en.wikipedia.org/wiki/Anifrolumab Don't think anyones got one for IFNg out yet.

I don't know, but I am one of them, and I know many others here are too. I don't like the implication that my voice somehow doesn't count.

To be honest I do think we came down a little hard on Karen Hargrave from ThereforME

because that is what being accountable to the patient community means.

Absolutely inexcusable.

You are aware that people with MECFS often lose huge amounts of functioning from covid infections? How are we supposed to protect ourselves if the entire world has given up other than by isolating and masking? I hate it but as a severe person I have no other choice other than expose myself to...

Really sorry to hear Jo is still in such poor health. I'm very interested in this paper - do you know whether it is likely to appear as a preprint?

not that I'm aware of - that does seem like an interesting connection

The things we have to put up with with this bloody illness!