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  1. Jesse

    PEM discussion thread - post-exertional malaise

    I feel like cortisol should also be looked in this context as adrenaline and cortisol work together in the stress response. Cortisol lasts a lot longer and has many effects on the body. I wonder if anyone has measured their cortisol after overexertion and during PEM.
  2. Jesse

    Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    Will DecodeME be able to classify different groups? For example based on severity or finding sub-types? Will it have enough statistical power?
  3. Jesse

    SMPDL3B a novel biomarker and therapeutic target in myalgic encephalomyelitis, 2025, Moreau, Fluge, Mella et al

    Maybe it should say "while it reduced its soluble form"? In the conclusion they phrase it like this:
  4. Jesse

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    I honestly don't really see the problem. I suspect that they will just explain the basics of progressive overload and give you some kind of exercise program depending on your fitness. And they might also give some recommendations on diet (getting enough protein) etc. I think especially for...
  5. Jesse

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    I think a physio could be helpful to guide you on which exercises to do, especially if you're unable to walk. I don't necessariliy trust them to set the pace though, mostly because I can't imagine not getting PEM lol. I think some of us will need to slowly build up that confidence. And even for...
  6. Jesse

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I guess the best time to try hard to get other researchers involved would be after the DecodeME results are out?
  7. Jesse

    OMF: Muscle Biopsy and Plasma Study into Post-Exertional Malaise, David Systrom, 2022

    I don't think these findings are intended to explain PEM? Isn't this where they're comparing muscles from ME/CFS and LC patients with deconditioned (through bed rest) healthy controls. It could help explain reduced functioning in ME/CFS right? I'm not opposed to this thinking though. Maybe if...
  8. Jesse

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    There was some discussion on this previously in this thread. It might not fully answer your question though. See below:
  9. Jesse

    Invivyd and Leading Researchers Form SPEAR Study Group to Assess the Effects of Monoclonal Antibody Therapy for Long COVID

    Key points: SPEAR Study Group initiated following multiple, independent reports of substantial clinical benefit associated with PEMGARDA® (pemivibart) therapy among people with Long COVID SPEAR Study Group collaborators Drs. Michael Peluso, Amy Proal, and David Putrino are key thought leaders...
  10. Jesse

    Open Medicine Foundation (OMF)

    Did they control for activity levels? As I'm assuming deconditioning does also affect mitochondrial biomass.
  11. Jesse

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Possibly. But there has to be something that triggers the brain to create these symptoms. We don't know what that is and it might very well be through the immune system as @Jonathan Edwards suggested in his latest paper. The problem here is that you're assuming that we can override these...
  12. Jesse

    The Concept of ME/CFS

    I'm pretty sure BPS researchers like to use the Oxford Critera which notably doesn't include PEM. Still can't get them any positive research results though..
  13. Jesse

    Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid

    This. It would be ok to diagnose comorbid anxiety and treat it in a way that does not risk the patient getting PEM. Mainly through meds and a therapist that truly understands PEM (which most don't so that might still be a bad plan).
  14. Jesse

    Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid

    Just to flip this around a bit: don't we have evidence from PACE that CGT is not effective for ME/CFS? Isn't this CGT approach to ME/CFS pretty much the same as what's being call brain retraining here?
  15. Jesse

    United Kingdom: Action for ME's PRIME project - research infrastructure

    Aligns well with the Decode results being out by then, so hopefully it will start some very targeted (and fruitful :emoji_fingers_crossed:) research. But seems like the main goal is collaboration and setting research goals. Isn't the main problem always research funding? Will it also be helfpul...
  16. Jesse

    A request to those involved in ME research to indicate their position on spinal surgery

    Do you have any concrete example of where this has lead to issues? I obviously see the problems relating to ME/CFS but do similar things happen in more mainstream areas? Performing unnecessary and dangerous surgeries based on no to low evidence..
  17. Jesse

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    A paid super like! Proceeds go to the S4ME research fund. ;)
  18. Jesse

    Microsoft's AI based diagnosis system

    Very interesting. Honestly it doesn't even surprise me based on my experiences with doctors.. they always seem incredibly biased, authoritarian and rushed. Then again I do also wonder about the limitations, if any. They do write the following for example:
  19. Jesse

    The association between Autism Spectrum Disorder and Chronic Fatigue Syndrome. A Care Plan Perspective, 2025, Nida Khubaib

    I'm pretty sure hypersensitivity to sensory stimulus occurs in both ASD and ADHD. There's also people that identify as being a highly sensitive person (HSP) reporting issues with hypersensivity to sensory stimulus and sensory overload (among other things). Although there's not much research on...
  20. Jesse

    What could it mean biologically that both physical and cognitive exertion can cause PEM?

    I've posted about this in another thread, but I wonder if the autonomic nervous system could be part of unifying these three types of exertion. For me overexertion almost always involves an activation of the sympathetic nervous system (most notably sweating, frequent urination, GI issues)...
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