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@Jonathan Edwards do you think Anktiva would risk revving up T cells and making things worse in a similar fashion to Checkpoint inhibitors if your T Cell hypothesis is correct?

I've said before, I think this is a false binary. We need the basic research and the clinical trials. With sufficient funding we wouldn't have to choose. Good quality research would entail doing both stuff like the anti-cd38 trials and SequenceME.

Oh, I just checked the treatments section of your hypothesis paper and you're right, you didn't. Don't know why I thought that. My mistake!

This is a big reason why we need real clinics - they can do this sort of tracking of patients with ease. A ten year study of pwME who are not on any treatment would be confounded if an effective drug were found e.g. if dara works. You'd see a massive amount of participants drop out to try the...

I just want to say - I feel really weird about this situation. I am so happy Whitney is talking again, and it was a really emotional thing to hear his voice. But this Leisk guy gives me so many red flags I can't even begin, and I am very worried about the perception that OMF supports JL leading...

Related question: is there any reason we can't aim for Polybio levels of funding for good quality ME/CFS research?

I might be mistaken but I think Fluge and Mella said at Charite this year they will be doing a study where they just track patients for a while to see what happens. I know they measure steps usually not sure what else.

That's crazy! Surely the lack of expected change seen here could have diagnostic purposes? And theorising around it would be much easier if people could be confident in it being replicable. The way people talk about capital s Science compared to the reality of how scientific research works in...

I think I am beginning to see your point about the biobabble after this fiasco.

This is really really disappointing.

Just more 'what doesn't kill you makes you stronger' nonsense. Everyone with post concussion issues just has a functional issue you see. Ignore any evidence to the contrary. Because if viruses or head injuries caused serious disabling chronic symptoms we'd have to change the way we live. And...

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.