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I believe what I was actually thinking was maybe the RECOVER TLC trials could take pointers from DecodeME and LOCOME. And that way have much more chance of a successful trial. But let's be honest it may well end up being more paxlovid and brain training.

It's baffling. As JE said recently, why didn't they fund a GWAS? Instead we've got this monstrous lumbering buereucratic apparatus that almost seems designed not to find the answers and to waste as much money as possible. I believe they have a lot of different types of samples collected from...

I have only just seen this comment but this would absolutely 100% fit with what happened to me as a young man, and also explain the 'neuro-only' form of long covid that is observable in support groups.

Would it be worth reaching out to PrecisionLife and expressing some of our questions and concerns? Maybe invite them to come on here and discuss their work with us? Or might that be something better left until LOCOME publishes?

Agree with everything you say in your post, wanted to ask if you had heard these trials were already happening? I swear Sayoni Das said they would start after they had the locome results in a presentation i saw once.

Maybe it isn't constant PEM per se but there is always something holding me back and slowing down/disordering my movements now that was only present during my worst crashes when mild/moderate. Like gravity has been turned up or I'm wading through treacle. That's not PEM as such but it is...

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.