Search results

As an example of what is being discussed: The Dutch government (Ministry of Health, Welfare and Sport (VWS)) and patient organisation C-support for Long-Covid (and I think Q-fever) have created various factsheets. Including a factsheet on MCAS. These factsheets are distributed to patients via...

Yes of course. That was the entire point of my comment.

Not even that is the case. If you want to look at means you'll at least have to look at the 10 people in the study. 4 had no improvements if I remember correctly?

That depends entirely on your assumptions. You might have a preference for Gauss but others might have one for Dirac, neither as justified in any meaningful way.

There is no study where there is a mean tripling of step count that is sustained in a placebo-controlled trial because there is currently no effective treatment for ME/CFS. What we know is that there are individuals with ME/CFS for whom this however applies. Depending on study context that rate...

But that is an apples to oranges comparison. Obviously the mean step count increase wasn't high, because the drug has no efficacy! If this study had the same sample size as the Rituximab study or was placebo-controlled and there was a mean step-count increase of 4k steps the situation would be...

You have forgotten the fact that there (likely) will be people with a 4K step count increase in the placebo group in the Rituximab trial. That was the point.

Thread on that study here.

They used step count as part of the Phase 3 trial https://clinicaltrials.gov/study/NCT02229942. In their published paper they write But as the story goes the results in the treatment group were not statistically significant in these measures either. We know the average data won't look like it...

Plently of trials have recorded pre trial step count and post trial step count, even if that data is often not commented on. I think Fluge and Mella have put in quite a bit of additional effort on trying to recognise step count trends including a longer pre recording phase, but even PACE had...

Yes, the terminology seems bizarre, but the terminology does not effect the actual data, even it might not necessarily reflect well back on the authors which of course is never a good first sign. Especially since they've now persisted with this terminology. There's perhaps the idea that what...

My mistake. I edited the post, should be correct now. I think one would hope so, but if it say turns out they have a ME/CFS rate of above 20% at 6 six months in this IF cohort, then it probably would suggest that things aren't very representative. If one considers their previous study to mean...

Which just describes the average month for a boxer or rugby player, most of which never develop ME/CFS (even though some develop CTE and many have an increased risk of other horrible neurological conditions). Unless it is somehow helpful for oneself, one might not always want to get too hung up...

Why "particular"? Unless there is evidence for development of severe ME/CFS being different in development how would it matter for this discussion? I don't think one has to understand any possible theories of ME/CFS to answer this question. ME/CFS appears to appear when a mix of genetic...

Agree that the terminology used is a bit unfortunate, but lets see what the data says. The abstract seems to suggest that things look different than in One-Year Follow-up of Young People with ME/CFS Following Infectious Mononucleosis by Epstein-Barr Virus, 2023 Scheibenbogen et al, so let's see...

I don't think it's worth much to pay any attention to that data. Reddit subs often tend to grow. I remember looking at different stats via https://subredditstats.com/ and none of the longcovid ones looked particularly special and almost every sub is shown to be growing. Besides that what applies...

And without any blinding many of those observations are pointless, might as well not have had controls.

As far as the SFN goes there doesn't seem to be any control so I don't think you can conclude that they identified anything common between certain illnesses or being ill. It more looks like they identified a group of doctors that'll count lines when paid to do so.

Maybe its just the way the data is presented but surely the SFN results are meaningless? I suspect that something similar might be true elsewhere, with practictionar bias being a problem. I don't think the healthy control group was of much use rather than just being used.

If I remember correctly I heard from a trial participant that one of the trials had null results. Given that both studies finished more than half a year ago I'd be suprised if the other one also didn't have null results.