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    Preprint Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from [GWAS] Meta-analysis, 2025, Petrucci-Nelson et al

    You don't have to agree with me or not, but I think it's the consensus on S4ME, or at least such a sentence is currently part of a draft of a factsheet on ME/CFS for clinicans (see here) and I don't think anybody has disagreed with that statement on that thread.
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    Preprint Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from [GWAS] Meta-analysis, 2025, Petrucci-Nelson et al

    The argument that has been made on distinctness of ME/CFS has not been made on finding significance but rather on the genetic risk profile looking distinct to known things. I think something similar can be argued here.
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    Preprint Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from [GWAS] Meta-analysis, 2025, Petrucci-Nelson et al

    I anticipated such a comment so I'd already edited my original comment (presumably whilst you made this comment). I don't think it really makes a difference to my assessment.
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    Preprint Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from [GWAS] Meta-analysis, 2025, Petrucci-Nelson et al

    On S4ME it has been previously argued that: 1- it seems unplausible that self-reported hEDS would stand for much, contrary to ME/CFS 2- DecodeME data strongly suggests that self-reported symptoms and self-reported diagnosis of ME/CFS (verified by self-reported symptoms) identify a group of...
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    Preprint Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from [GWAS] Meta-analysis, 2025, Petrucci-Nelson et al

    The data that they used for ME/CFS is indeed the DecodeME data (see table 7 of supplementary data). Looks like ME/CFS status was verified in the hEDS population by ticking a ME/CFS box in a questionnaire and for the ALL of us set is was simply using EHR data.
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    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    We have no idea how many measurements F&M took as part of this trial. I see no reason for correcting for multiple tests here and I'm perfeectly fine with how the findings were reported, but we shouldn't forget that the probability of one measurement showing a correlation purely by chance is...
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    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    A correlation so strong we have no indication it even passes a very mild multiple testing correction?
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    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Which has also been studied already, but of course it then depends on how one exactly defines "function" and in what context and what assay is then supposed to measure that.
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    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    We've already had countless studies looking at NK cells in ME/CFS. I think we can be pretty sure if this study would have picked up a meaningful correlation (say between severity and NK cell count) the other studies should have as well, but as far as I remember apart from the "Marshall-Gradisnik...
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    I have no idea how things will work in practice. I'd imagine they'd take a full history, run all the tests they deem as necessary and then make a decision that fits their suit. I'd think that would be quite different from purely using the CCC as checklist but I could be wrong (certainly everyone...
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Yes, those are the known recruitment criteria, which are fairly similar. The point I was making is that the deciding factors would, if they exist, be unknown factors relating to being more or less stringent in the medical assessment and application to who is participating. I might be...
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    Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation, 2025, Jothi et al

    Thanks for sharing. Unless they then look at something like a Wüst, Hanson replication or similar (i.e. CPET+x) that would seem entirely pointless to me. Just having another CPET study would not add anything, we already have dozens of them. Nobody is going to to develop best pratices for...
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Maybe, but interest is not the problem anyways. The intramural study also had 500 people submit their application but only managed to recruit 20 patients. The only problem would be recruiting enough people that meet whatever strictness of applied criteria. Since we don't know how that will be...
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    Daratumumab, isatuximab (CD38 drugs)

    Yes, but she's also been talking about launching a trial with a B-cell depleting drug for 5 years now. I wouldn't hold my breath just yet until things are official.
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    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    I don't think we have any information on which conditions were exactly excluded from DecodeME (but could have included people with thyroid autoimmune conditons). Data on comorbid conditions is still forthcoming I believe and the questionnaire included questions on thyroid conditons.
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    I think that's hard to know, for example even given all information you don't know how rigorously the assessment of diagnosis will be handled. How detailed do the medical files have to be, what medical examinations are a must, do you exclude all people with autoimmune diseases, what about...
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    I don't think there is information on that. Recruitment taking somewhat longer is possibly a good sign. Any ME/CFS trial that is not based on an already existing clinical cohort that fills up quickly is a probably a red flag for recruitment not being rigorous enough. Let's not forget that the...
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Because from the time you know how the roughly results look like (once everything is done), until publication often takes several months. Often you present your results at conferences or to colleagues before that and will already have a feel for the results before that once the first analyses...
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    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Someone could publish interim results if they wanted to, but I don't think that is too realistic or purposeful here. It seems to be forgotten that this trial wil be fairly small: 66 patients. That might be small enough to just wait things out. We're only speaking about a handful of patients...
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