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  1. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    I've changed the title of the petition to Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review for now. We probably need to add an update as an edit to the 'Why this petition matters', and we'll get another petition update out before Christmas.
  2. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    I had previously commented that a 2019 review was becoming more irrelevant every day, that it could easily be superseded by a new, better review, Cochrane or not. Changing the publication date, the 'old wine in new bottles' trick is certainly a clever trick. But, it is also a trick that it is...
  3. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    We have posted a new petition update: Cochrane abandons the replacement review 19 Dec 2024 Cochrane cancels the review update A year after Hilda Bastian's last update from the Independent Advisory Group, and months after she last responded to any posts on her talkpage, Cochrane has made the...
  4. Hutan

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Just a summary of the NIH ME/CFS study I think this bit got a bit garbled - Walitt's infamous quote gets another run: —by Brian Doctrow, Ph.D.
  5. Hutan

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    That study, also by Oxford Nanopore, is looking at epigenetics. A large-scale epigenetic analysis would be another very useful ME/CFS study. What I like about the latest ME/CFS study announcement, aside from the rather important possibility of it telling us something useful about the disease...
  6. Hutan

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    I wonder if it would be possible to offer a commercial service that could subsidise the project analyses? I mean, it sounds as though Oxford Nanopore is a private company, and Edinburgh Innovations exists to commercialise UofE innovations. So, could a whole genome genetic reporting and...
  7. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Cochrane's standing in the world of clinical guidance has been taking quite a hit. And with each year that passes, and with the strengthening of the acceptance of ME/CFS as the disease name, a 2019 review of exercise for chronic fatigue syndrome becomes more and more irrelevant. I think a new...
  8. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    The more I think about, the more I think the announcement of the timeline for the Australian NHMRC ME/CFS Guideline is likely to have played a part in this. It's a really slow process - some 4 years. Paul Glasziou is likely to be having some say in what the NHMRC does - he was an author of the...
  9. Hutan

    Exploring the shared mechanism of fatigue between [lupus] and [ME/CFS]: monocytic dysregulation..., 2024, Zheng et al

    We have a thread discussing N-Acetyl-L-cysteine here N-acetyl cysteine (NAC) Reading the posts there, responses to people's open label trialling seem to range from no effect to a small positive effect on ME/CFS symptoms. It does not seem to be a game changer. Google's AI tells me that...
  10. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    @Medfeb, is the author group considering doing the review anyway, or does the presence of Cochrane employees mean that the author team composition would have to change? I guess Cochrane has delayed things enough that the Larun et al review is the one that forms part of the evidence base...
  11. Hutan

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    It's not actually true that there has been no new evidence. The belatedly published Crawley paediatric paper springs to mind Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al. That study also...
  12. Hutan

    Demystifying Long COVID International Conference 2024

    Tomorrow and Tomorrow...Studies of the Neuropathogenesis of Long COVID - Serena Spudich, MD That presentation on neurological/cognitive symptoms from a Yale team is worth a watch. No remarkable findings yet, and they have looked at a lot of things, but they are clearly working methodically and...
  13. Hutan

    Trial Report RESTORE ME: A RCT of Oxaloacetate for Improving Fatigue in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2024, Cash et al

    The abstract claims it was a double blinded study. Well, actually it doesn't quite, there's a bit of sleight of hand there The subjects were enrolled in a double blinded trial, yes, it's just that it didn't stay double blinded through to the analysis of the data. I wonder if some of the...
  14. Hutan

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    I'm of course wondering if anything like this could be relevant to ME/CFS. This is from the NIH deep phenotyping study of ME/CFS. PASC.
  15. Hutan

    Neurologic sequelae of COVID-19 are determined by immunologic imprinting from previous coronaviruses, 2023, Spatola et al

    I still haven't read this paper and probably won't get to it today, but I think it could be interesting to read in the light of the MS B cells in the brain idea.
  16. Hutan

    Vaccination prior to SARS-CoV-2 infection does not affect the neurologic manifestations of long COVID, 2024, Mukherjee et al.

    Yes, but it's based only in the people who come to the clinic. It's possible that vaccination is changing the percentage of people who have neurological problems, or severe enough neurological problems that the people go to the effort of getting to this clinic, out of the total who are infected...
  17. Hutan

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    Antibody producing B lineage cells invade the central nervous system predominantly at the time of and triggered by acute Epstein-Barr virus infection: A hypothesis on the origin of intrathecal immunoglobulin synthesis in multiple sclerosis 2016 paper by some of the same authors as this 2024/2025...
  18. Hutan

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    I think AI got 'The Interesting Part' a bit wrong or it's incomplete. I think the authors aren't so much saying the EBV infection happens before MS starts (although that is implied because they are suggesting that the EBV infection causes MS). Yes, there is the paradox of universal EBV...
  19. Hutan

    Broad Analysis of Serum and Intrathecal Antimicrobial Antibodies in Multiple Sclerosis Underscores Unique Role of EBV, 2025, Florence Pache et al

    Intrathecal space The area between the spinal cord and the membranes that protect it, also known as the subarachnoid space. This space contains cerebrospinal fluid, which cushions the brain and spinal cord. So, this study looked at serum and cerebrospinal fluid
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