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    Petition: The NHS must take measures to STOP Dill deteriorating

    This is one of the most bizarre things about the psychobehavioural ideology: it is so immensely incredibly wasteful in myriad ways and yet nobody in power ever wakes up to it! As @rvallee has said elsewhere though, this situation could not exist without the deep prejudice and hatred doctors...
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    So how do we go about this then? Is it a case of wait for DecodeME and everything else, and then approach them as a community? Or is it more a case of someone who knows someone having a cosy chat with this hypothetical Addenbrokes professor in The Eagle?
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    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    Exactly! Just that these people don't deterioate.
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    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    That could explain why GET doesn't harm absolutely everyone, and there are people who believe it helped them.
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    Why "brain retraining" concept as course makes no sense

    This is exactly how I approached retaining/rehabilitating myself when I tried the psychological approach. I became convinced my physiological symptoms were a response by my brain to 'protect' me from drinking alcohol (recovering alcoholic) by keeping me in the house. I remember jogging down the...
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    Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid, 2024, Krishna et al

    Also, I wonder if those planning the second round of Stimulate ICP trials are aware of this study...
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    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    Another thought - you have said that the studies you have had advance sight of will bring significant progress but there will likely be more experiments to do before we are in the home stretch. So does it follow that those studies should probably look at severe patients to get the best results...
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    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    I think the complication is that I don't know how likely those of us who deteriorated severely from intense exercise would have been to become severe without it. I had a lot of viral hits, several head injuries and countless big exertions in the three and a half years before I began pushing...
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    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    What do you make of the fact they found raised IFNy and CD38 in severe patients? As well as TNF and IL-17 which have come up on here before.
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    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    See this is totally reasonable and I can absolutely see that being the case. But I got the impression that wasn't what Cliff et al were implying.
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    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    It is interesting that they found CD38 and IFNy in severe and not in milder patients..
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    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    I find this line of inquiry extremely concerning. The idea that mild and severe are different diseases seems totally illogical to me. You would have to discount a lot of patient testimony to even consider it. Personally, I was mild for three and a half years before becoming severe. I slowly...
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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

    I hadn't heard about this! Was this Fluge and Mella too?
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    Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid, 2024, Krishna et al

    How great would it be if this turned out to be true/causative?
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    News from Canada

    This man has entirely too much influence.
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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

    I think it could be either. Hopefully preliminary results in two years.
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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 huge amount of the long covid phase 2 drug trials took around 2 years.
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    Does anyone else get a runny nose, sneezing, coughing etc during PEM?

    Yes it tends to occur when my PEM is worse
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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

    Although it says 2030 completion on the clinical trial site are we really sure it's going to take that long? Seems ages for a relatively small phase 2.
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    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Hers she says feels like she's been drugged. Like it doesn’t feel like normal falling asleep. And she sleeps for a couple of hours typically when it happens. It's been the case since I met her, 2 years before we got ME but she had had post viral illness before then after glandular fever.
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