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Coming back to this point. Can you explain what you mean by saying that in the phase III rituximab trial, the SF36 PF did not correlate with step count data? As far as I can see, it correlated very well. Looking at table 2 of the 2019 paper: The rituximab group improved by roughly 10 points...

What's nice is, if Fluge & Mella do a phase III, we will know, because they put it all in their papers for everyone to pore over.

Gotcha. I don't think these things matter as much as we might think they would. The part of the placebo response that is drug-related starts when the drug starts (unless the participants know the drug would not be expected to have an effect till X weeks). The run-in data is still useful to...

Mm, that's too big of an assumption for me. Am I understanding correctly that you're saying that the step count (for major responders in phase II ritux above) must be wrong, even though it tallies well with the SF36 physical function score, because you think step count only increases if...

I klnow where you're coming from, but I don't think the data we have to date support that position. It is an assumption. In the 2015 phase II study, the people who were thought to have responded particularly well to rituximab had step counts that are the stuff of dreams for most of us: That...

There are good reasons to be cautious, I think. In the dara pilot, the SF36 physical function scores of people given rituximab increased by a mean 29 points (from a mean 26 to a mean 55) over [timeframe unclear to me] months. In the phase II rituximab study (Fluge et al. 2015) , the SF36...

Agree, looking forward to seeing it. Jason et al. 2022's sample at 6 months was "30 were classified as ME/CFS [Fukuda] and 18 were classified as severe ME/CFS [Fukuda + CCC/IOM]". So it will be a bigger sample and its prospective nature means it should be more representative. (Right?) That...

But it is wonderful to have Jason's team doing (a) prospective studies and (b) long term follow-ups. I hope they keep following them up, again and again. We could learn a lot. This is very useful information (square brackets contain my understanding of the categories, will amend if incorrect...

Yes, they did indeed. In Jason et al. 2022, they defined severe as fulfilling more than one set of criteria: While I understand that this was a neat way of differentiating two groups of patients in their papers, I think it is very unhelpful for the field to have researchers using "severe...

Re neurology, I keep thinking of this recent study, where there was a turning point at 32. Re immunology, could there be immune system differences between those below 30 and above 30 that make recovery more likely in the former?

Thought these Scottish iron deficiency guidelines were good and clear:

Re @DMissa's comment about people who understand these imaging methods... @Janna Moen PhD might also be able to shed light.

Oh you've just reminded me of a rheumatologist I saw. Every time I said "joint pain", they would correct me with "muscle pain". "Joint pain" seemed a reasonable way to me to descibe pain in shoulders, elbows, hips, sacroiliacs etc. But no. I wasn't allowed say it.

Yep. Worth remembering that pwME/CFS had normal reward motivation on the EEfRT in Walitt et al.'s study. And despite ME/CFS having been occupied by psychiatry and psychology for three decades, lack of motivation and apathy have not been big themes of their work. They've either been very...

Hopefully @Woolie will chime in.

About grounding: I can't access the paper, so I don't know what these authors mean by grounding. I learned grounding from a couple of meditation teachers (from my bed, via books and recordings). Thought I'd share how they used it. Grounding was about literally feeling your physical...

:thumbsup: Thank you for confirming that I can safely forget about this! Really hope you start feeling better soon.

Maybe tell the rituximab story? How some people improved, doctors got interested, they started a trial, we heard about remissions, some pwME sought it out and managed to get a doctor to prescribe it, yada yada...and then the trial showed it did not work better than an infusion of saline. So...

Thank you so much, @DMissa , to you and your colleagues for doing this work and for writing it up so carefully. I really appreciated your clear posts summarising the study. My brain is not working at the moment, so I cannot read the paper (and have learned not to read pre-prints because the...

There's a BBC article today that is relevant to this discussion. It has also been mentioned on this thread. In short, there's a group of patients in Canada who were diagnosed with a mystery neurological illness by a doctor called Marrero, who suspected an environmental cause. Authorities now...