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Also appreciated Ryback's clarity, transparancy and fastidious approach, even if the lack of replication is a little disappointing. But as was said, it shows us where not to look.

I had the familiar experience of feeling a huge amount of hope when they talked about drug trials and my enthusiuam being somewhat dampened by coming on here and reading this thread :dead:. (of course this is part of what makes s4me so valuble!) Did anyone catch that they are planning to do...

The issue is that many patients are not well informed and while pacing up isn't as destructive as full GET it can still cause harm and deterioration. I have seen people harmed by these kinds of programs in LC groups. Of course the progress is welcome and cannot come soon enough but as you...

I wonder if they will say what these repurposed drugs are after DecodeME and LOCOME are published. It would be very good to have something that moves the needle a bit while we wait for the heavy hitting drugs, so its good to hear the trials are going faster than planned.

Seconded. But also with 48 and 72 hour measurements!

Hopefully a bigger replication attempt is on the cards, especially if they think they've found therapeutic targets.

I think this is a very good point. Especially if some respected researchers signed the letter, that might give it some weight. But we would have to be careful about who drafts it. I'm having flashbacks to those 'fund BC007 phase 3 because it definitely works even though the phase 2 hasn't...

Agreed, and small sample size is disappointing but the findings look interesting.

Also from this article: 'The LOCOME and MELO studies “are feeding results and information to each other and accelerating the process,” he says. That means the Mechanostic test and repurposing studies should all be completed within two years—almost twice as fast as originally predicted.'...

This is only possible if your ME/CFS is mild and you don't need any accommodations or mobility aids.

There are two trials of Jak/Stat inhibitors in long covid currently ongoing. Baricitinib and another one I can't quite recall. Acknowledging the concerns raised above, if this were to be a genuine finding it would make those drugs much more compelling candidates. I believe Jonathan and his co...

This is a brilliant idea and the results will be useful for all drug trials in this field. It's good he stresses that. The cyclo phase 2 makes me more hopeful for this than I would be about another phase 2 after a positive pilot trial but we still need to wait for the data.

This just goes to show how deep the predudice against ME runs in pharma and funding. You couldn't ask for more methodical and dedicated people to run your trials. The pharma part makes the least sense because as Mella says, if a phase 3 showed the same results as the pilot and the cyclo...

Does anyone know if the placebo controlled Polybio Rapamycin trial is keeping track of these biomarkers? I am interested in this drug but I have seen very mixed results from the people who have tried it in long covid groups since it's been in vogue.

As I understand it crossover means placebo and drug groups switch round after the initial phase right? So are they saying this will be the case for phase 3 or are they using it in a different sense here?

So here is a sickness behaviour that resolved. And in some people it seems to get stuck on like ME does.

My point is that there is very clearly a phenomenon of post infectious OI with tachycardia on standing, and maybe POTS isn't a good name for it, and maybe the research and practice around it can be dodgy but there is absolutely a real condition that people suffer from.

The evidence is in the testimony of people who report massive rises in heart rate on standing, dizzyness, tacycardia etc etc after a covid infection that is disabling and chronic. Yes maybe tilt tables and over 30bpm heart rate rise might not be the best way to diagnose, yes maybe a lot of...

I hope there is. I would love to be able to go to gatherings and play/attend gigs again if there was a really effective treatment. In some ways being functional but still shut out of the world would feel like a much more bearable but still quite rubbish sort of purgatory. I have also been...

This is a very important point. There is a RECOVER long covid IVIG trial but frustratingly it's for POTS. And i think another arm of that trial is exercise... But yeah IVIG and similar might be a worthwhile thing in the short term if it can keep some people out of a severe state. Care costs and...