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  1. V.R.T.

    International ME/CFS Conference 2025 Berlin May 12-13

    I am popping back from my S4ME holiday to highlight the fact that in Jeroen Den Dunnen's talk, two of the subgroups groups of LC patients his team identified had markers of neuronal damage and elevated type 1 interferons respectively, which fits well with a couple of the hypotheses we've been...
  2. V.R.T.

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

    Hi Chris, sincere thanks for all your hard work and advocacy on our behalf. Exciting to hear more analyses of the data are in the works! I was wondering if there was any sort of timeframe for the publication of the HLA analysis? And am curious whether the Manhattan plot published with the...
  3. V.R.T.

    News from Germany

    I don't think ten years is a rational estimate in the event a drug is trialed now and found to work, which is what CS was referring to. And I think it could be significantly sooner if drug targets are found. I certainly don't think we should get comfortable with the idea it will take ten years...
  4. V.R.T.

    News from Germany

    The 10-20 years is based on how long it takes to develop a new drug from scratch without any acceleration in terms of trials. It is banded around a lot of places like the cfs subreddit, a contingent of which seems to revel in creating a sense of utter hopelessness in sufferers. From what I...
  5. V.R.T.

    DecodeME in the media

    I believe Tronstadt is part of Fluge and Mella's team so I assume he feels the immune system links suggested support their Daratumumab etc trials in some way. I tried to watch his recent talk on the mechanisms he (and I assume F&M) currently believe underlie ME/CFS but couldn't follow it very...
  6. V.R.T.

    Do you have fever as a part of PEM?

    Yes the other night when I crashed badly my partner commented on the fact my hands had gone freezing cold, and its far from the first time that's happened.
  7. V.R.T.

    Do you have fever as a part of PEM?

    I get extremely feverish, with all the typical symptoms except a significantly raised temperature. Body boiling hot to the touch (confirmed by others) and everything. IIrc temp has been slightly raised once or twice but nothing comparable to how abysmal I feel. That said wasn't the information...
  8. V.R.T.

    DecodeME in the media

    I wonder what mechinisms he was referring to here. A new line of attack is emerging...brain and nervous system equals psychosomatic. Frustrating but predicable. Are they seriously that scientifically illiterate or are they just frighteningly okay with brazenly lying to the public?
  9. V.R.T.

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    How does this square with the practicalities of basic science and clinical trials though? Are there experiments that could prove this model, or drugs that could treat it? And both JE and Jnmaucich have said that the immune pathology that could underlie this might well not be detectable in the...
  10. V.R.T.

    After DecodeME - next steps for the ME/CFS community?

    Thank you, that's a reassuring answer, if a little cryptic in parts haha(I would love to know the significance of Thanksgiving!). Like Sasha I would be interested to know where these possible drug targets will arise from. I note that Chris Ponting said in his post publication interview with...
  11. V.R.T.

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    This is all very well thought out. And the neuron/synapse story fits very well with the symptoms I have experienced traditional models of ME do not easily explain. Tremors, fasculations, feelings of unquantifiable pain/sensitivity, freezing up etc... Some questions: Could the feedback loop be...
  12. V.R.T.

    After DecodeME - next steps for the ME/CFS community?

    Now DecodeME is out and youre back on dry land @Jonathan Edwards, I'd like to pick your brain about a couple of things if I may. I thought this thread might be the appropriate venue. Firstly, you said a couple of months ago that DecodeME is one of a number of studies that should provide us with...
  13. V.R.T.

    List of causation hypothesis for follow up after DecodeME

    The research and hypotheses I am most interested in currently: The Edwards/Cambridge/Cliff Hypothesis, if it still stands post DecodeME, and whatever emerges like a phoenix from its ashes if it doesn't. @jnmaciuch's interest in type 1 interferons, and interferon as a possible lead generally...
  14. V.R.T.

    List of causation hypothesis for follow up after DecodeME

    My original post in the main DecodeME thread that was referenced in Kiristar's post above, for reference.
  15. V.R.T.

    CrunchME

    The flashing subtitles and constant cuts of post tiktok social media content is almost unwatchable to me.
  16. V.R.T.

    List of causation hypothesis for follow up after DecodeME

    I think it would be worthwhile to talk about the hypotheses or areas of investigation we find the most compelling. An offical S4ME list could perhaps be contentious and require a vote to make it fair, but at least in an informal fashion i think it would be a good idea.
  17. V.R.T.

    Genetics: HLA-DQA*05:01

    It is puzzling. Have you reached out to Chris Ponting and asked him about it?
  18. V.R.T.

    Genetics: HLA-DQA*05:01

    Is it possible that they want to be absolutely sure about this 'uncertainty' before releasing it? And because their funding period was coming to an end they decided to release the eight first while continuing analyses on HLA? I can understand the desire for a finding of that significance to be...
  19. V.R.T.

    Interferons as mediators in ME/CFS

    This reminds me that over at Phoenix Rising a couple years back a group of them got Peginterferon Lamda manufactured and tried it on themselves. Iirc there were very mixed results. Possibly not relevant as a different kind of interferon to alpha/beta/gamma but thought it was worth mentioning.
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