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Yes, we would want early stopping if the trial was so successful that it busted through the evidence threshold early. The only reason you do a big trial is to give yourself the statistical power to pick up the predicted small effect size. If the effect is bigger than you thought, you have an...

I'm really thinking about the day that, for example, a drug is revealed in a trial as successful for ME/CFS. If that happened today, I'd like to know what would be stopping us all from getting the drug tomorrow - so that we can knock those obstacles down. Yes, in the UK, the NHS would be...

I still know barely anything about this trial (I need to read up!) but conventionally, I think that large RCTs do planned interim analyses to check for outrageous success or harm, either of which might mean early stopping. I don't know if this trial is large enough.

:arghh: Although presumably if it's super-successful it would be stopped on ethical grounds (i.e. unethical to continue if you've already demonstrated massive benefit)?

I think we're at cross-purposes! I agree we can't do anything right now based on the Norwegian work but I'm not talking about setting things up for the next trial. I'm talking about preparing for the time when a drug (perhaps dara) has been proved to work, and it needs to be delivered to PwME.

Quite possibly! I haven't read stuff properly and am very confused about what stage we're at and what needs to happen next. OTOH, we don't want to be waiting for the end of a definitive trial to start making roll-out possible, if there are things we need to do to make that happen. For example...

This is a good point. We don't have physician-led centres ready to leap into action. If this dara trial was positive, would that lead immediately to the setting up of such centres, and if so, how immediate would that be? Would we be stuck waiting in our beds another six months, a year, two...

Wow, that's an amazing talk - I highly recommend watching it. What an impressive and lovely guy! What a fantastic project! (I feel really inadequate now.) What a pity we know largely naff all about the biology of ME/CFS and are probably not even in the database. But the whole thing about...

So if the Norwegians get a positive result from this trial we could be getting it off-label at the end of the trial? So if it works, is the only thing slowing us down the speed at which this trial gets carried out? In which case, the extent to which we are not all hands on deck fundraising is...

I don't really understand the implications of all this... does it mean the current trial might suddenly get cheaper? Or be brought to a halt if the current manufacturer decides it's no longer worth producing?

I'm a bit confused - if dara's patent expires next year, doesn't that mean that the manufacturer will keep producing it but sell it more cheaply?

If this current trial comes up roses, what would be the steps to rolling dara out as a treatment, if it proved worthwhile? Another trial? How big?

Google's AI says this: I don't understand any of that! Can anyone explain when it might come off-patent in the UK and Europe (which would make trials cheaper here, presumably?)?

I haven't read all this thread so I hope this isn't the wrong thread or that I'm repeating a question but I was just looking at this account of the dara pilot and I'm struck by the difference (p.5) between baseline characteristsics of improvers and non-improvers in relation to length of illness...

That's good news! How can the dara trial be brought to their attention? Or the NIH to Haukeland's attention? The UK should definitely be supporting crucial trials, wherever they're happening.

I'd been wondering that - but their website suggests they only fund international collaborations with the UK.

I'm sorry, @Revel! I am also being outperformed big-time by a mother in her 90s.

That's interesting because I've read that it get harder and harder for older people to build muscle, but I don't recall anyone talking about heavy weights/min reps vs light weigths/many reps.

I think about this a lot. I don't know how much of people feeling more tired as they get older is due to the accumulation of the effects of a poor Western lifestyle (rubbish diet, lack of exercise, etc.), and how much it's possible to avoid it by living healthily. I can't exercise but I try to...

Contradiction in terms.