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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!

Was this all from the anktiva? How many injections were there for that?

Btw did you have any significant side effects from this? Or feel any better? It's been trialled for long covid in The US but I'm very skeptical it could help.

The smug, naked, paternalistic misogyny of this shit. And oh look- neurodivergent = silly children who don't understand their own bodies. Medicine needs a thorough and vigorous shake up. It would be like if police training actively and openly encoraged officers to be racist (rather than doing...

Agreed

I mean the proof of that would surely be if you and others who raise their NK cells in such a way respond to dara (which I hope you do!). It could be that low NK cells indicate a different pathology that can't be altered by just artifically raising NK cells. I don't know if you're allowed to...

A bit brain fogged right now - So are you saying this supports the idea that people with lower NK cells have the same pathology and are not a different subgroup in that sense. And that the response to dara is tied to NK cells (in a different, opposite way than cyclo?) Or are you saying it...

Appeasement has got us precisely nowhere. Why should we not advocate for the kind of services we actually need?

We don't! We were speculating about whether they could. If anyone knows the answer to that, it would be great to know!

Oh we've gotten wires crossed. I meant that SequenceME had a good chance of changing MECFS research, not it being funded.

I think this is deeply and uncessarily cynical.

Absolutely, I think many people hold these mind body beliefs because it gives them a sense of control. Incidentally, this also what the current approach of extremely controlling pacing as 'treatment' advice that many clinics give does. Like, I was given the impression that if I managed my...