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Yep if it turns out LDN works in these trials (however likely we think this really is) and I benefit, I've missed out on years of improved function because there was no good quality evidence and a lot of conflicting reports by patients and quacks who say that it's good for pseudoscientific reasons

It's very frustrating considering how important this isatuximab trial is

I think announced they got the finding for C19 a few weeks ago. Not sure whos going to fund another cd20 trial though...

I think that this has to be combined with a proactive approach to setting up good clinical trials of things that stand a decent chance of helping, especially when new evidence emerges.

I've seen accounts online of pwLC feeling much better in days to weeks on Baricitinib. And accounts of them feeling worse and having to stop, fwiw.

I think it's important that services contain at least some clinicians with good clinical trial experience, because when new findings emerge that suggest drug targets, if there are drugs that target whatever it is already available we want a robust trial set up as promptly as is feasibly possible.

Have we talked much about the fact that IL-6 seems to come up repeatedly in long covid studies?

I have some gut issues (diagnosed with SIBO last year but haven't done treatment because the doctor who diagnosed me wanted me to take things like activated charcoal and a thousand supplements - every appointment he changed what medications he would prescribe me). When my gut issues are flaring...

That's quite a positive outcome! Hopefully....

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?