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Good question - I don't know. But if they're willing to buy up the rights to the better drugs so that they can sit on them, then we'd be in trouble.

Oh, sorry! I didn't read the front end of the thread properly. Thanks!

But we don't know that any of those people are going to come up with something curative. The mab drugs don't cure rheumatoid arthritis, for example, and there's no reason to think that dara would cure ME/CFS. What if the curative drug would be something that isn't already available and would...

I'm trying to think of drugs that actually cure things, and the only ones I can think of are for conditions that kill you (cancer, infections), rather than chronic disease. Are there any chronic disease drugs that are curative, and if so, how did they come about in a way that managed to dodge...

Thanks - but that thread seems to be specifically about one guy's book...

Do any of the ME/CFS mechanism theories currently being punted about on the forum make any predictions about whether certain, or all mammals might get ME/CFS? Would knowing about its presence in animals help us in any way? (Apart from helping squash the 'false illness beliefs' stuff?)

The public event starts at 4pm tomorrow UK time, right?

Also horribly fascinating. What strikes me most is the amazing resilience of the PwME posting on Reddit who have been faced with the barking madness of some health professionals.

Thanks for telling us about this - this is fascinating. An ignorant question from me - is it likely that the use of AI will accelerate this field to a useful degree for us in the next few years?

Well done, @Tom Kindlon! I too have only just come across this thread, and it was Trinity College's loss! Your contribution over the years has been huge.

If someone who disagrees with me and who I'm trying to influence engages with me, I generally try to engage back, if I have the energy - nothing to lose. Also, given that the discussion is happening in public, Sarah Tyson is not @Trish's only audience.

:banghead::banghead::banghead:

I don't want to burden anybody with a big explanation but would anyone like to explain what's wrong with the concept? Just a sentence?

I'm not sure whether to participate - I've lost all sense of whether this is an objectionable/controversial project or whether we should support it by helping pilot-test the questionnaire. Can anybody give a one- or two-sentence heads-up?

Another excellent reason to help them get things right, if they're going to end up representing us!

Is there any reason why any patient shouldn't see the study protocol for a randomised controlled trial of a drug? I can't think of one.

But people aren't prescribed drugs until those drugs have undergone safety trials and trials for the condition that they're being prescribed for (unless they're being prescribed off-label, which is in a minority of cases). Also, the doctor prescribing them should be putting that patient first...

I'm horrified by this. I'm amazed it's even legal, to require people to allow some unknown substance to be shoved into their bodies. It's illegal in the UK to sell food without listing the ingredients. How is this allowed? How is this kind of trial getting past ethics committees?

There's a carrageen (?) nasal spray that has claims to do similar, I think, but I can't remember what the trial results were. I'd rather be squirting carrageen up my nose than some heavy-duty drug, but maybe there are considerations I'm not aware of. I wonder what was in the control spray.

Anybody's guess, but it seems peculiar, and an 'emergency situation' sounds more like one in which someone has caught Covid and needs urgent treatment.