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    How would a deficit in processing of physiological signals lead to ME/CFS?

    No, this was also when I was healthy. Another example: for years I was frequently late to pick up my children from school, even though that was a fixed time point every day, week after week for years - because I had no sense of when 3.30 was approaching unless I constantly checked the clock, and...
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    How would a deficit in processing of physiological signals lead to ME/CFS?

    I'm interested to know what the evidence basis is for this being 'everyone's universal experience', because it isn't mine at all. To use your examples, I sometimes sense the need for lunch at 11.30 am and sometimes at 4 pm, and there's no way I'd be able to bring an interview to a close after...
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    Living With: UK digital platform for NHS services including ME/CFS

    I agree it looks like it has promising aspects. But the featured "Activity Energy Diary" and "Structured Thought Diary: a guided CBT-style tool for patients to record symptom triggers and responses" don't suggest that their advice on learning to pace will be particularly good. Or that they have...
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    DecodeME in the media

    Maybe this website could have a donation link somewhere prominent on the home page?
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    Review BMJ - Cognitive and mental health outcomes in long covid, 2025, Aretouli et al

    As Groucho Marx put it: "If we had some ham, we could have ham and eggs, if we had some eggs."
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    The symptom signaling theory of ME/CFS involving neurons and their synapses

    Would this theory imply that (what we currently call) ME/CFS and post-viral fatigue/illness are the same thing, just that in some people it resolves fairly quickly and in others it doesn't?
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    Keystone symposium Long COVID and Other Post-Acute Infection Syndromes August 10-13 2025

    In my cynical moments I think it isn't an accident that these trials are being done with a confused definition of Long Covid that lumps together different conditions so that no meaningful results come out of it. Because meaningful results would be quite inconvenient. I don't mean that's what...
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    Keystone symposium Long COVID and Other Post-Acute Infection Syndromes August 10-13 2025

    They [the Department of Health I mean] don't think it's real in adults either. They keep trotting out the line that the REGAIN trial proves LC goes away with exercise and 'behavioural support'.
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    Possible long COVID biomarker: identification of SARC-CoV-2 related protein(s) in Serum Extracellular Vesicles, 2025, Abbasi et al

    Ref 7 is: https://pubmed.ncbi.nlm.nih.gov/39337079/ A Pilot Study on the Effects of Exercise Training on Cardiorespiratory Performance, Quality of Life, and Immunologic Variables in Long COVID
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    Criticisms of DecodeME in the media - and responses to the criticisms

    Really good letter @Robert 1973 Andrew Millar: "Chris Ponting says that medical misogyny has held back research in myalgic encephalomyelitis (News, Aug 8), but appropriate scepticism of scantily evidenced claims may also have contributed." Funny how appropriate scepticism of scantily...
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    DecodeME blog: X marks the spot where ME/CFS biology can be discovered

    Definitely, if it's a well-defined cohort of ME-type Long Covid rather than the 'anything-that-affects-you-after-Covid-that-doesn't-have-another-explanation' definition of LC.
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    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    The LLM isn't actually detecting any real hype, it's just generating some text about 'hype' because similar text strings are often found in the sources that it's been trained to mimic.
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    Criticisms of DecodeME in the media - and responses to the criticisms

    My guess is they prepared a media response strategy based on the assumption that genetic linkages to depression and anxiety would be found. Without that, they have to fall back on pretending the whole thing is insignificant.
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    Criticisms of DecodeME in the media - and responses to the criticisms

    The dogs bark, but the caravan moves on.
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    DecodeME in the media

    Tessa Munt MP on Channel 4 news making a strong point about the inadequacy of the Delivery Plan & that we need real action now from Wes Streeting and Ashley Dalton.
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    Action for ME (UK) fundraising

    Thanks for this - I've just got round to signing up.
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    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I've just stopped using it* too, for pretty much the same reasons (and I disliked how it kept pushing a certain interpretation of HRV and 'coherent breathing' that wasn't supported by its own results). I did find it useful initially for symptom tracking and showing me how much exertion was...
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    The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

    Ironically, the level of general ignorance and hostility towards pwME and pwLC in the NHS in general will make the specialist services look better in contrast. The bare minimum feels like generosity when elsewhere you've only been met with a kick and a spit.
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