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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...

Ok but your initial comment talked about moving the field along which to me meant scientific progress. And SequenceME has much better chance of doing that than a replication study.

But surely that would clarify none of the uncertainty about what genes the SNPs point towards and miss all of the same stuff that all GWAS miss, the stuff that WGS picks up. Not that it wouldn't be important.

Above are the two exchanges I found earlier. Neither were conclusive If anyone knows whether UK labs are eligible for German Nationa Decade funding please help clarify the situation!

Not mixing it up with EU funding. I have only found a couple of exchanges where we discussed the possibility but it doesn't seem to have been concluded one way or the other, apart from one person quoting the national decade people as saying international collaboration was vital. I can't insert...

What could this mean? And would this effect be exclusive to lc or could this theoretically be possible in MECFS too. I know HLA DQ came up in DecodeME. I feel like we have heard about DR before too.

That's what I was told iirc. But I could be misremembering.

Funding is not exclusive to Germany. Yes, against common sense and whats best for patients! Best case would be they do this and contribute to SequenceME imo.

I really wish they would just give the money to SequenceME. Why waste time setting up their own inferior study when such a well designed study is ready to go in months and seeking funding?

Reminds me of when I was mild and undiagnosed