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There's currently quite a few ME/CFS clinical trials. The Charite regularly runs trials, @Mebfeb has an ongoing trial, Simmaron is doing some stuff and others are active as well. I don't think one has to worry about things not working out if there is actually positive data. Currently people are...

Yes, I agree. I'm guessing there will be an interim analysis at some time point?

Yes, I think it's plausible that its a non-issue for the Fluge and Mella trial (even if one person not knowing other participants doesn't rule out other communications between participants), my comments were supposed to be more general than that but probably not quite fitting to this thread.

I think this is quite a worry with many of trials currently happening in this sphere because it is often that case that a majority of participants are indeed communicating with each other. That cannot be neglected (some of the decentralised trials have essentially even been recruiting patients...

With all due respect, like I already mentioned above, that is simply not the case. LDN has been trialled in a large RCT for Fibromyalgia with negative results. It very much looks like to me that people are actually not concerned with looking at the evidence if this isn't even known. You can...

In case it helps we have a thread on this study here: https://www.s4me.info/threads/longitudinal-analysis-reveals-high-prevalence-of-epstein-barr-virus-associated-with-multiple-sclerosis-bjornevik-et-al-2022.24194/. It has also been discussed in other contexts on this forum but I think that...

I agree with the language context @Arfmeister, but I would be very strongly against what you proposed in terms of using stories of recovered people as advertisement. I hope no serious scientists would think of that as suitable. I also think that focusing on very specific stories has the downside...

Whose weight of experience? There are plenty of people with weight of experience that claim ME/CFS should be treated with CBT/GET. Should their experience be neglected even if they have seen more patients and have a much higher scientific pedigree than anybody that swears on LND (take for...

For the people digging through the data: There are quite a few other studies by Scheibenbogen et al that also did hand-grip strength testing (some are Post-Covid ME/CFS or just Post-Covid focused), it might be hard to know how all these samples overlap but I just wanted to say that there's...

Does anybody have a summary of what is going on? Skimming the thread I was under the impression the Nanoneedle findings by Davis et al didn't "replicate"(it's not quite the same experiment so I'm not sure whether it makes sense to talk of replication) but that they might have found a different...

A little side remark: If I remember correctly I think it has been discussed elsewhere that there have been some studies that have suggested higher ANA levels in ME/CFS, but that the evidence is rather mixed and that someone should look at this properly? Is this still the consensus or has that...

I'm guessing one could ask them why the are doing it. Of course that wouldn't really matter even if it works and it might not really matter to the data either. The problem with trying to avoid discussions about possible placebo-like effects (including regression to the mean, natural recovery...

But why should this be the case? Maybe they've simply gone up the chain to explore what other ideas are left? If you can't solve the problem with a certain approach, you have to do something else, but sometimes you will first explore something that is similar in approach and often that will...

But both studies were negative and the phase 3 trial had a much larger sample size. It couldn't have been underpowered unless we are invoking recruitment criteria or something else, but I don't think there's much reason to do that. And of course the effect replicated rather than the opposite...

Sure, but this just keeps on ignoring the fact that people in the placebo group improved just as much. There's no need to invoke false positives or chance. Sure, some effects can be related to efficacy, but we already know the opposite as well, you can have "positives" without any efficacy, just...

I think everybody would be working backwards from trial data if we had any meaningful data. If we'd have positive data from a sufficiently controlled study I think everybody will work backwards. But the problem is that we currently don't know that but already know that it's easy to not have any...

I can't claim to understand the comparison. Many autoimmune disease also last for decades if not a full lifetime and you can have efficacy of Rituximab. The more practical problem will be that if the efficacy is so low that you'd need a study of thousands of patients or even more in an ideal...

Maybe, but it's equally possible that they had to venture somewhere else precisely because other approaches failed. That's essentially how things often work. Also note that the sample size for the Rituximab study was almost 3x the sample size of the planned Daratumumab study (and there's...

It can be depending on your measures/spaces ;). But the point would more so be that there's probably no sample in the first place if you restrict yourself to those that are meaningfully comparable, which is anyways what you want to be doing in the first place. That's why the argument was made...

I'm saying that one would be comparing apples to oranges if the measurements in the MM study are entirely different to the ones in the Fluge and Mella study and I don't think anybody has provided evidence for them being comparable in the given context.