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  1. Jonathan Edwards

    Digital physiological biomarkers predict within-person symptom changes in complex chronic illness, 2026, Aitken et al

    The literature that gets referred to focuses on reduced HRV with deconditioning as opposed to fitness in athletes where HRV is highest. I am not sure why a short time sample of HRV should tell us anything useful about the risks of PEM on a particular day. I would have thought PEM was likely to...
  2. Jonathan Edwards

    Digital physiological biomarkers predict within-person symptom changes in complex chronic illness, 2026, Aitken et al

    I have often wondered when the day will come when computers rule the world and we are just their servants tending to their needs while foolishly thinking we are still in charge. A little while ago I realised that that day already came.
  3. Jonathan Edwards

    Digital physiological biomarkers predict within-person symptom changes in complex chronic illness, 2026, Aitken et al

    And wouldn't the result for that first minute depend on whether you were already feeling grumpy and trying to wash your face when the water was too cold or whether the sun was shining and someone had brought you a special cake for breakfast in bed? I can't quite get my head around how this is...
  4. Jonathan Edwards

    Digital physiological biomarkers predict within-person symptom changes in complex chronic illness, 2026, Aitken et al

    They seem to be measuring raised heart rte and reduced HRV for a short period in the morning. That is presumably not going to reflect any episodes of exertion during the day. So it will not be a measure of how much you have overdone things, just a measure of maybe it being a bad day on which to...
  5. Jonathan Edwards

    UK North Wales - Living Well Service for ME/CFS and Long Covid, Betsi Calawadr University, Claire Jones

    Absolutely agree. Jan has provided a very reasonable response but the truth is that compliance with NG206 is very far from what is wanted. And for an 'ME course' to be better than a 'CFS course' seems to illustrate exactly what the problem is. Care for ME/CFS is not about courses about activity...
  6. Jonathan Edwards

    Dysregulated NK-cell gene expression defines the enduring symptoms of long COVID-19, 2026, Ray et al

    Post moved from duplicate paper thread. Actual data in abstract, authors, please. otherwise I move on. Edit: Oops. Where have I come across this sense of déja vu before?
  7. Jonathan Edwards

    The itaconate shunt hypothesis

    Further tests ? I think you would have to ask Robert. I forget.
  8. Jonathan Edwards

    IV IG: Intravenous immunoglobulin infusions

    There was never any doubt about that. Doctors did that, and only that, for centuries before anyone hit on treatments that actually worked. It isn't that hard for a patient to make an informed decision though - just look up established guidelines like NICE, which are derived from a rigorous...
  9. Jonathan Edwards

    FatigueSense app

    I am still worried that the app output is getting ahead of itself. Judging by the screenshot of the website given in post #2 the app does give advice. It may not be instructions but anyone trying to use this is likely to assume there is justification for suggestions about what they might do...
  10. Jonathan Edwards

    IV IG: Intravenous immunoglobulin infusions

    The key factor for monoclonals, which have similar issues with reactions involving complement activation or mast cell responses, is that with IV you can stop input the second you get a reaction. In general reactions occur in the first 30 minutes, after which time you can gradually increase input...
  11. Jonathan Edwards

    The itaconate shunt hypothesis

    We had quite. lengthy discussion with Robert in a thread here. The itaconate idea is intriguing and the implication of alpha interferon makes some sense. However, inasmuch as it has been tested I think the results for the interferon were negative. That does not kill the theory but I don't think...
  12. Jonathan Edwards

    FatigueSense app

    I do think that this sort of project is worthwhile (I seem to remember recommending it as the other useful thing to do when recommending a GWAS project on an MRC committee some years back!) I think we all do. But it is an area awash with ungrounded claims and overzealous therapy. As far as I...
  13. Jonathan Edwards

    FatigueSense app

    I am also a bit confused about what stage this is at. It sounds as if this is early exploratory work to see whether a wearable can predict pay back the next day better than the person could do by experience. But the initial letter in the first post suggests that the App is already set up to...
  14. Jonathan Edwards

    FatigueSense app

    I agree, it would be good if you could give us some idea of what hypotheses are being tested here @nanay and what practical benefit is envisaged? I don't understand this sentence: The app then provides personalised insights to help users better understand and manage their daily energy levels...
  15. Jonathan Edwards

    News from the USA, United States of America

    The author seems sadly confused. Maybe having been brought up before guidelines came into fashion I have always been aware of their limitations but the proposed alternative seems even less reliable. It is good to hear that the outcome was positive.
  16. Jonathan Edwards

    IV IG: Intravenous immunoglobulin infusions

    Probably not. It depends on how you handle delivery. For most protein agents like Ig and Mabs IV is safer if you monitor the infusion because you can stop it. With sub cut, the adverse reaction may occur after you have already given the full dose and there is nothing you can do to reverse that...
  17. Jonathan Edwards

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Somebody important somewhere in the medical world is saying that we do not really need this. The College of Physicians should be ashamed.
  18. Jonathan Edwards

    IV IG: Intravenous immunoglobulin infusions

    That is only relevant if you are wanting to flood Fc receptors over a very short time span (a few days at most) - in a bleeding crisis from immune thrombocytopenia for instance. We aren't talking about short term crises of that sort so presumably the Fc flooding is irrelevant. IVIG is often...
  19. Jonathan Edwards

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I received this as well, with a slightly odd cc list. It seems to be being sent out piecemeal to various lists they have. I cannot see any justification for delay. Implementing an essential service highlighted by recent deaths of young people is not something you delay for administrative...
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