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  1. Jesse

    Interferons as mediators in ME/CFS

    Would it have to also be in the muscle or could it be solely in the brain? DecodeME points strongly to the brain right? I guess that's harder to test?
  2. Jesse

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

    The way I'm understanding this is that the 8 highlighted results are genomic loci / variants (SNPs). These point to a region in the DNA, not to one specific gene. These genomic loci are then named after the closest gene. Which is why they seem to appear as specifc genes. But it's not guaranteed...
  3. Jesse

    Closed UK: DecodeME updates, was recruitment thread.

    Will be a long wednesday till 7pm though :nailbiting::emoji_smile:
  4. Jesse

    Review Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Komaroff et al.

    Agreed! I made a slight update to my comment which you might not have seen yet.
  5. Jesse

    Review Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Komaroff et al.

    I don't know how common it is but (especially severe) PEM does make me feel very depressed. I don't struggle with depression at all outside of PEM. Then again it's somewhat similar to the depressed feeling I sometimes get when I'm very sick, so maybe it fits more with that theory.
  6. Jesse

    Review Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Komaroff et al.

    Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome Anthony L. Komaroff, Robert Dantzer Abstract Debilitating symptoms for many years can follow acute COVID-19 (“long COVID”), myalgic encephalomyelitis/chronic fatigue syndrome...
  7. Jesse

    ‘How I reversed my memory loss from overlooked brain condition’ (FCD)

    This really reads as if they're just making shit up as they go along.
  8. Jesse

    AI-driven multi-omics modeling of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, 2025, Xiong et al.

    Damnit you beat me by 4 minutes haha! :emoji_unamused:
  9. Jesse

    News from Germany

    Yeah that's a lot easier to say as a former health minister, rather than as a current one. Still, it's hopeful and exactly the kind of language I missed in the UK delivery plan.
  10. Jesse

    News from Germany

    They actually make some pretty accurate statements but then draw the complete wrong conclusions.
  11. Jesse

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

    In the Netherlands they're trying to set up something like that (well, no public clinics, that's only for LC, see below, but they do work with private clinics). NMCB: ME/CFS Lines: Also for Long Covid: Post-COVID Network Netherlands: For Long Covid they did set up expert clinics in most...
  12. Jesse

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

    I'm not against it I just think effects will be marginal. We know there's some drugs that slightly help people with symptoms. And small improvements are a big deal for people with ME/CFS. But I'm not convinced we need specalists just to prescribe beta blockers, sleep meds or LDN or whatever. I'm...
  13. Jesse

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

    Now we're cooking! Honestly I really don't see the point in all the supposed ME/CFS "care" anyways. People just need to be diagnosed, get disability, home care (if necessary) and nutritional support in extreme cases. Trying to offer anything else just deludes doctors and public officials into...
  14. Jesse

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

    OMF is already doing a trial on LDN. I wouldn't mind seeing a trial on LDA though. Daratumumab could also use some funding. Edit: to be clear though, I agree, we need leads first.
  15. Jesse

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

    I woke up feeling irritated and this thread has grown that into full on anger lol.. :banghead: I wish someone could scream some sense into them. Like they say "oh we invested over £6.5m into research over the past 5 years and we're planning 2 new useless projects of around £2m". And we're...
  16. Jesse

    Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

    The possibilities definitely seem endless. I mentioned in another thread that even doing too little seems to make me worse..
  17. Jesse

    Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

    It was.. so I'm also not sure what they meant in relation to your comment.
  18. Jesse

    Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

    I raised it earlier today: It obviously isn't part of the core pathophysiology. I was just musing about whether it could have some relevance in (permanent) detoriation and one's severity in general.
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