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All good points. I just feel that if they took this group of 4 non responders, if their NK cell counts are now over the threshold as Utsikt says, and retreated them and followed them as a case study as with these low dose patients they did recently and the severe patients they will do next...

Me too. I'm trying to be realistic and temper my hopes but this seems really promising and it's quite hard to stay level headed about it. Even if it doesn't show an effect maybe something else will have turned up in the basic research by then. It is exciting seeing how it might fit with all...

Agreed that would be interesting Lets hope so!

Maybe yeah. I just think it's a shame that they're not going to retreat the non responders who now have higher NK cells because we could get some idea of whether the relationship between response and NK cells is as simple as how many you have. It feels frustrating to potentially wait years to...

I wonder why not? maybe it's so as not to dilute the evidence in favour of dara if it doesn't work but surely if they now have counts above the threshold it would give a clear indication whether there is a direct relation between NK cells and response or something more complex. I find this...

So Goebel has discovered evidence that disproves the myth, written an essay debunking it and in that essay is for some reason folding elements of the myth into the real science?

Amen.

I genuinely think these people need deprogramming. The mentality is cult like.

That's very interesting thanks.

I'm sorry, that must have been awful. I started having unpleasant symptoms at 19 and was totally gaslit over them. It really messed me up and as you say made me depressed and insecure. Afaik I didn't develop ME proper until 26 but that framework that was laid when I was younger was what was...

I don't quite follow what this is suggestive of - that LLPC depletion isn't the way dara works for ME (if it works)?

I think the desperation to shove ME/CFS back in the psychobehavioural/functional box shows how important it is to these people's whole house of cards. If (when) ME is proven physiological, they are going to have a much harder time arguing that any of their bullshit is real. Because if they were...

It absolutely is not nonsense. It made me doubt myself so much I did what they said and got much worse. The same happened to many other people I know or have encountered online. I agree that it making everyone else doubt us is at least an equally big problem, but many people are harmed...

What is currently the best way for people in the UK to donate? Is @Joan Crawford's fundraiser still active? Or should i direct them to the English language ME fund page?

The phrase 'during covid' never fails to induce steam venting from both my ears.

Can't they just give it a bloody rest? Every single day another paper is churned out, every time the same shoddy research practices. They are trying to bury us beneath a blizzard of bad science.

Is donation still necessary/possible? I want to put a message to family about xmas fundraiser and don't know whether to do this or Chris Ponting's lab/A4ME now

thank you, this is helpful

I think JE et al mentioned IVIG as possibly being worth trialing by researchers in their hypothesis paper, but from what I've heard it's so exhausting and gives a lot of side effects I think it's wise not to risk PEM without any evidence of efficacy.

This sounds interesting- is there anything to it?