Search results

  1. V.R.T.

    New "Jesse's" GP rule of 3 visits

    Yes this is the thing, I am too disabled to hide it anymore.
  2. V.R.T.

    Heightened innate immunity may trigger chronic inflammation, fatigue and [PEM]…, 2025, Che, Hornig, Bateman, Klimas, Komaroff, Lipkin+

    Why is RECOVER-TLC not exploring any of this? Why do they insist on working siloed off from the rest of the post infectious illness field? I will never understand.
  3. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    I agree too, this is a really good idea. Agreed @Sasha, it would be good to talk to Haukeland about their perspective on all of this. I'm not up to it myself atm unfortunately.
  4. V.R.T.

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

    It sounds like we will need to wait for the HLA analysis before we can say anything about this either way with confidence, in that case.
  5. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    This
  6. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Agreed. If there is a way this can go faster without losing the standards of rigour that we need, we need to know and work towards it happening. Whether the drug works or not, we need to know as soon as it is feasibly possible. I think the amount of medical neglect we have faced makes us numb...
  7. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    My point is that they seemed to have an overly rigorous criteria, perhaps to slow things down to a crawl as part of said foot dragging exercise. Which might sound conspiratorial but when you consider the history of ME at the NIH and the effort prefference nonsense they came up with... Fluge and...
  8. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Nobody is suggesting that. Yes like the NIH study you referred to.
  9. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    I don't think this is a useful comparison. The NIH study was a deliberate foot dragging exercise run in part by someone whose goal was to prove ME was caused by thoughts and behaviours. There was a lot of criticism of the fact they only enrolled under 20 patients from such a big pool.
  10. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    This is a very good question. Perhaps we could email the trial coordinator about it. I think her email is somewhere in the last few pages of this thread.
  11. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Perhaps there'll be a trial called Have-You-Tried-Turning-ME-Off-and-On-Again?
  12. V.R.T.

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

    Do they mention why they had reason to distrust it anywhere?
  13. V.R.T.

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

    Would it be an idea to ask Chris if this is the case? It seems like a very important point to get clear on.
  14. V.R.T.

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

    This is what Chris Ponting said when I asked him about HLA a few weeks ago, thought it might be relevant.
  15. V.R.T.

    Microneurography Reveals Unmyelinated Small Nerve Fiber Dysfunction in Long COVID, 2025, Ribeiro et al.

    'A persistent immune or inflammatory response has been proposed […] However, an alternative explanation would be […] A generalized dysfunction of unmyelinated somatosensory and sympathetic nerve fibers would lead to widespread symptoms because of their almost universal body distribution, leading...
  16. V.R.T.

    News from the USA, United States of America

    Well this isn't going to be good. Seen speculation that it's going to be paracetamol they blame. For some bizarre reason.
  17. V.R.T.

    UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care

    This is needlessly vague and plays into the BPS people's hands. 'Oh we already have a specialist NHS service of bullshit and stealth GET no need to worry.' We need a specialist physician led service with home visits and trained nurses to do blood draws and the like. Why on earth could they not...
  18. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    I think it would be really good if some labs could look at CD38 so we have a better understanding of the evidence base by the time of the results. I think Chris Armstrong posted that he planned to do some more work in that area the other day.
  19. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Is there any reason to think they would be helpful in terms of their mechnism? Or is it just that they are used for multiple myeloma?
  20. V.R.T.

    Norwegian Fluge & Mella daratumumab Haukeland trial 'ResetME' now accepting international donations

    I mean, they do say that the study is funded by patients and patient organisations, so maybe a patient org has stepped up and done the right thing. But it could be the ME funds original 4 million NOK. I really hope it's true but I'm not counting my chickens until it's confirmed.
Back
Top Bottom