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  1. hotblack

    What empirical evidence is there that heart-rate monitoring helps avoid PEM?

    That isn’t what I was tying to say. Take a look at my previous post, this is at least partially about HR, HRV and PEM. There seems to be a predictive element or at least something which helped in learning about what activities could trigger problems. If you wait until you feel bad it is too late.
  2. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    To add some more to the above mitochondria transfer chain of thought, a couple of things from DecodeME discussions @chillier flagged this in the candidate genes writeup And there’s also I’m wondering if these could all be contributing factors to why a cell may look to import mitochondria or...
  3. hotblack

    What empirical evidence is there that heart-rate monitoring helps avoid PEM?

    When healthy and running my heart-rate was well into the mid 100s when doing so and I felt fine. Since ME/CFS if it goes above 80 I’m iffy and over 90 I can barely stand up and am screwed. Cause or effect is questionable but there’s at least a strong correlation here. Doing what I can to keep HR...
  4. hotblack

    What empirical evidence is there that heart-rate monitoring helps avoid PEM?

    Yeah, at least for me HR has been a significant part of my illness. Now what that means is questionable. HR seemed to be a useful indicator but it was more a case of you’ve already done too much, stop. HRV was maybe more of an early warning sign, but tbh I’m not sure how accurate it was. It did...
  5. hotblack

    Doctors believe they are ‘on the brink of a new class of treatments’ for MS

    Direct link to the above article in the Independent And today’s research press release/news item from University of Cambridge https://www.cam.ac.uk/research/news/common-diabetes-drug-and-antihistamine-could-together-repair-multiple-sclerosis-damage-trial-finds And the MS Society who sponsored...
  6. hotblack

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    These? Trial info in Norwegian https://www.helse-bergen.no/kliniske-studier/plasmacelle-rettet-behandling-med-daratumumab-ved-mecfs/ English language fundraising page with 3 documents (the two useful ones linked directly below)...
  7. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    This is a really interesting paper https://pmc.ncbi.nlm.nih.gov/articles/PMC11590279/ Edit: thread on the paper now created here If I’m understanding and summarising correctly, as well as mitochondria being shared from parent to daughter cells, cells can also share mitochondria through...
  8. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Thanks @ryanc97 yeah, the papers on the Wikipedia page give a good overview of mechanisms too. And not to say NK and ADDC isn’t the mechanism that is important here, just trying to get a firmer idea of what that is grounded in and how confident we are. And it is perhaps useful to have someone...
  9. hotblack

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    That’s been a question I’ve had. Wikipedia quotes a few papers when it says: Do we have a circular argument here that NK cells must be relevant because the mechanism is ADDC and the mechanism must be ADCC because NK cells are relevant? Are other mechanisms just as likely or have I missed something?
  10. hotblack

    Bayer First Company to Advance Cell Therapy as Well as Gene Therapy Against Parkinson’s Disease

    Here’s the paper on the phase 1 trial of Bemdaneprocel https://www.nature.com/articles/s41586-025-08845-y And a paper on a phase 1 and 2 trial it seems https://www.nature.com/articles/s41586-025-08700-0 Finally info on the phase 3 trial exPDite-2 https://clinicaltrials.gov/study/NCT06944522...
  11. hotblack

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Great summary @dave30th Thank you. Flabbergasting response from the lead author. They really do seem insistent in thing themselves in knots rather than just saying “yeah, this could have been done better” and withdrawing it.
  12. hotblack

    Bayer First Company to Advance Cell Therapy as Well as Gene Therapy Against Parkinson’s Disease

    I first heard about this in a paywalled reuters article More info in this press release from a few days ago Source - Yahoo Finance There’s also a nature article from earlier in he year but it’s also paywalled. And some older items from the company website on this technology. Bayer - Cell...
  13. hotblack

    New "Jesse's" GP rule of 3 visits

    That sadly sounds like the best approach for anyone that can.
  14. hotblack

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    True :) And I really like the constructive attitude you’re describing and are approaching this with. At the same time I’d hate for anyone to get their hopes up and end up being disappointed if things just take as long as they have said it will take. So just wanted to drop that in here. I’ll be...
  15. hotblack

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Doing this properly is essential. I get everyone’s desire for speed, I really do, I want (need) results and treatments ASAP. But most important is that they do this right. This team have trust from people because they know what they’re doing and do things properly. They have set a timetable...
  16. hotblack

    [uniQure] Positive Topline Results from Phase I/II Study of AMT-130 in Patients with Huntington’s Disease

    I just heard about this via the BBC article, impressive stuff. Imagine if they could combine things like this with the developments to enable large molecule therapeutics to cross the blood brain barrier.
  17. hotblack

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    BIOS-Flash-ME would fit with the basic input and output systems being screwy and needing to be fixed
  18. hotblack

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    I found this site useful with reviews of noise cancelling including of the QC Ultras
  19. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Do you mean because it’s a part of a subset of the immunoglobulin family it pops up or is there some other reason or link? I’d completely forgotten about the HLA-DQ find.
  20. hotblack

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Not sure if this has been explicitly asked, but does the lack of MHC appearing to be significant in DecodeME results increase the likelihood of whatever is going on being MHC-independent. In other words, should we be looking more at something involving gamma delta T cells, MAIT cells, NK cells...
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