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  1. RedFox

    Criticisms of DecodeME in the media - and responses to the criticisms

    COFFI is wrong, DecodeME really is groundbreaking. It's the first bite of the cake.
  2. RedFox

    Improving images used to depict ME/CFS

    Maybe we need to sorts of photos you see in articles whose subject matter isn't easily illustrated--often in the case of people ripped off or harmed by pollution. A picture of someone and their family sitting down in a setting that represents them or their community--like their porch or a park...
  3. RedFox

    Well-known, famous people with ME/CFS (public thread)

    Really saddened at how they covered it, by assuming that his recovery from ME/CFS was some sort of personal achievement as opposed to a stroke of luck or a treatment that worked. Stoner himself said nothing about how or why he recovered. We don't know why recovery from ME/CFS happens, but it's...
  4. RedFox

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

    Have any of us processed the data using false discovery rate (FDR) correction instead of Bonferroni? It would be useful to see what genes pop up when we use a looser test of significance, especially as a method of hypothesis generation.
  5. RedFox

    Metrodora Clinic news and discussion (Salt Lake City area)

    That's disappointing. I was hoping they'd help a good number of people while being a bright spot in research and advocacy. But they only lasted about 2 years.
  6. RedFox

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

    I like the writing style of this paper. When I read through the whole thing, it struck me as very comprehensible considering the subject matter. Unfortunately, a lot of scientific papers are extremely dense and you can only understand them if you're an expert in that tiny field. But Ponting's...
  7. RedFox

    Mortality in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): an updated analysis of memorial records, 2025, Sirotiak & Amro

    I don't trust research based on obituaries because somebody once used them to claim gay people had far shorter life expectancies in order to push their homophobic narrative that it's unnatural and dangerous. There's huge potential for bias: Some people's obituaries won't mention ME/CFS...
  8. RedFox

    Closed UK: DecodeME updates, was recruitment thread.

    I'm very thankful for all the hard work your team put into DecodeME. I've been following it for so long and finally the results are coming out. I can't wait to see what it is. I don't expect a negative result at all. Not with 20k people. I predict that the genes they find will primarily be...
  9. RedFox

    Open [Remote, USA and Canada] Hydrogen Water Dosing Study for ME/CFS

    My bad. I assumed that they would be funding it if they're promoting it in emails, but I haven't heard they're funding it.
  10. RedFox

    BBC article: Spoan syndrome: The rare disease in a remote town where 'almost everyone is a cousin'

    Why do I just imagine a headline in the style of Metro when I read this Town in Brazil where people can't WALK: Psychologists explain why
  11. RedFox

    Open [Remote, USA and Canada] Hydrogen Water Dosing Study for ME/CFS

    I'm very disappointed the OMF is funding this. There's no plausible mechanism by which water with hydrogen dissolved in it could help, and the previous evidence they gatheres is so low quality as to be meaningless. Edit: I don't have any evidence they're funding it rather than just promoting it.
  12. RedFox

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Gee, I'm glad for the thread because the abstract made it seem promising enough to definitely warrant a larger trial, when it's in fact slightly better than the Rituximab data. It would still be good to do a larger trial, but keep expectations modest.
  13. RedFox

    Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study, 2025, Weaver

    They don't have a treatment but a supportive doctor can mean educating someone about pacing, helping them get disability benefits or trying to find a medicine that takes the edge of certain symptoms. It's unfortunate that Long Covid and PAISs are stuck in the pre-science era in terms of...
  14. RedFox

    BBC article about successful immune system med for rare genetic ADPS disorder

    This is very good. it's a drug targeted at the condition's pathology and not gene therapy.
  15. RedFox

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I don't dislike the whole paragraph. It just needed a little rephrasing. It's true that women in our culture are somewhat more likely to be conscientious about their health. (It's probably not enough to explain a 2-3x difference in prevalence though.) But you're right, that point isn't essential...
  16. RedFox

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Thank you to the authors for taking the time to write your thoughts in this paper. You have an interesting and novel hypothesis. As a non-expert, it seems as plausible as any other model of ME/CFS I've seen thus far. I don't think the wording on topics that could be confused with BPS is...
  17. RedFox

    Efficacy of Vitamin D Replacement Therapy on 28 Cases of [ME/CFS] After COVID-19 Vaccination, 2025, Kodama et al

    Same here, I started taking 2,000 IU of vitamin D a day, thinking it might help my energy, and it didn't.
  18. RedFox

    Well-known, famous people with ME/CFS (public thread)

    https://www.phoronix.com/news/Several-Linux-DRM-Orphaned Several Linux DRM Drivers Orphaned Due To Developer Health One of the developers on the Linux Kernel has had to step back from maintaining a few drivers due to a "fatigue illness". While it's a small story, and the developer chose to...
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