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It’s probably me just hoping for early results. If the last participant starts summer 2026, they will be done by the end of 2027. Your guess is as good as mine for how much time they need after that.

Well, we can’t really complain about the bad doctors because they will be replaced by the terrible ones.

So we essentially have to accept the beatings because if we don’t we’ll be beheaded..

Surely if you’re in charge of something you get to avoid using therapies you think is harmful? And the harm being critical might cause to the practitioners is dwarfed by the harm done to patients if the bad interventions are allowed to continue.

Why is that very likely? Changing their answers, sure. Changing how they actually feel, not so much. How would CBT be supportive if it tries to make you believe in a reality that doesn’t exist? Do you have any examples?

I found another potential issue with the blinding: https://s4me.info/threads/vagus-nerve-mediated-neuroimmune-modulation-for-rheumatoid-arthritis-a-pivotal-randomized-controlled-trial-2025-tesser-et-al.47856/post-672849 I can’t find any data on the tingling or other sensations. It might be in...

The authors are arguably hiding disadvantageous information: For all three measurements, there were instances of the BI being =>0.3 at 1 month. The patient’s BI values were also substantially higher than the values of evaluator and Co-PI, potentially indicating that the patients had more info...

It would catch substantial deterioration. But I agree that step count gets very confounded at the milder end of the scale.

The other one isn’t much better:

That seems very narrow - I doubt most LC patients ever end up at a hospital.

I struggle to remember names so excuse my ignorance here! It’s good that he’s familiar with it and great if he can help the others.

This is how they tried to do it: They also hid this gem outside the abstract: the catastrophizers held their hand in the ice-water for longer! They try to claim that maybe the study was underpowered due to the large standard deviations for repeated ice water tests, even though they made a...

That’s great news! Tangentially relevant: what can be done to help researchers that are new to the field to get up the ME/CFS learning curve as quickly and efficiently as possible? What’s essential for someone new to know?

I don’t have access so I haven’t seen the data, but the abstract makes it clear that it was a complete null result so it might be useful to have as a reference.

The causal status of pain catastrophizing: an experimental test with healthy participants Severeijns, Rudy; van den Hout, Marcel A.; Vlaeyen, Johan W.S. Abstract In the current study we report findings on the effects of experimentally induced catastrophizing about pain on expected pain...

That’s not much to go on. Have they said more elsewhere?

It seems like there might have been a deviation for the trends between 2018 and 2022. That would be as expected with both the strain of living in a pandemic and more importantly widespread and frequent covid infections: The authors appear to be focusing on the psychosomatic angle.

The NIH effort preference study had a few complete remissions without any intervention. If you look at lp-fortellinger.no you’ll find many stories of people doing far more than they used to for a long time before eventually crashing. I know a person that abruptly recovered from 2-3 years of...

Fair enough. You seemed neutral to testing it on severe pwME/CFS, which confused me.

Why are people still doing trials without long term tracking of activity levels? Exclusion criteria: Is there anything about how they think the drug might work? From my googling it seems like it blocks the PD-1 receptor that T-cells use to connect to your own cells to tell the others to no...