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  1. Yann04

    United Kingdom: ME Association governance issues

    I haven’t had the energy to follow this thread very thoroughly but has Riley not taken the hint? Are they taking a sort of “wait till all this blows over” kind of approach?
  2. Yann04

    News from Mexico, Central America and the Caribbean

    It definitely does, I often read the Huffington Post and they often have an AP logo at the top of the article (to signify syndication). But most news services explicitly mention it either at the top or the bottom, that wasn’t done here.
  3. Yann04

    News from Mexico, Central America and the Caribbean

    That explains it. I was indeed suprised by the global scope and detailed report coming out of a tiny paper in Saint Martin.
  4. Yann04

    Jingfang Granule promotes the tricarboxylic acid cycle to improve chronic fatigue syndrome by increasing the expression of Idh1 and Idh2 2024 Wang+

    ABSTRACT Ethnopharmacological relevance Chronic fatigue syndrome (CFS), as a complex, multisystemic, and multisystemic disorder affecting multiple organs and systems, often accompanies by symptoms such as post-exercise discomfort, sleep disorders, cognitive difficulties, and orthostatic...
  5. Yann04

    News from Mexico, Central America and the Caribbean

    From Saint Martin (dutch colony in the caribbean) Many long COVID patients adjust to slim recovery odds as world moves on https://www.thedailyherald.sx/supplements/health-beauty/many-long-covid-patients-adjust-to-slim-recovery-odds-as-world-moves-on Edit: see comment below
  6. Yann04

    News from Mexico, Central America and the Caribbean

    A news thread for news from Mexico, and central American and Caribbean countries.
  7. Yann04

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

    Perhaps the sequencing of the post-covid ME/CFS samples coule be funded by the Schmidt Initiative for Long COVID (a billionaire ex-Google CEO’s intiative that claims to have a global focus)
  8. Yann04

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

    The way I understand GWAS (30,000 data points) does a sort of birds eye view check of the genome and highlights common variants and associations. While Whole Genome Sequencing (3 billion data points) tests the entire genome. So a lot of stuff could be missed by a GWAS that WGS might pick up. It...
  9. Yann04

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

    This is a good shout. I was looking for a possible genetic analysis service myself in the past but they nearly all have either (1) Major privacy flaws (ie. they sell your data) (2) Don’t have my trust because they offer “personality”, “skincare”, “exercise” and “diet” recommendations based on...
  10. Yann04

    Review Incidence and prevalence of functional neurological disorder: a systematic review, 2024, Finkelstein, Diamond, Carson, Stone

    Lausanne University (CHUV) Long COVID clinic. They refer anyone with brain fog or “unexplained” disability to the memory clinic which is a run by a neurologist who basically diagnoses anything and everything unexplained as FND. The long COVID clinic will still see you but only after you go to...
  11. Yann04

    Is there a treatment for bruxism (teeth grinding)?

    Best thing for me was retainers. Don’t have to worry about grinding anymore. For me personally grinding was mostly a problem linked with the adrenaline or whatever causes that “wired” feeling after overdoing things.
  12. Yann04

    JK Rowling new book — chronic illness references

    i hear you, just for clarification my comment was meant to be sarcastic
  13. Yann04

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

    I don’t particularly like speculating on this, but my curiosity forced me to ask, could the shocking adverse effects found in Crawley’s study have made her rethink the whole GET narrative, and subsequently explain her cryptic withdrawal from ME research and “treatment”?
  14. Yann04

    ...psychological factors are associated with clusters of pain, fatigue, faecal incontinence and IBS-type symptoms in [IBD] 2024 Wileman et al

    They hear severe distressing symptoms and imagine the “distressing” is the problem as opposed to the “severe symptoms”.
  15. Yann04

    JK Rowling new book — chronic illness references

    As @obeat previously suggested. Since she’s a billionaire and negatively caricatured pwME, I’m sure she won’t mind funding a 7£ pound study on ME. That’s like, what? 0.1% of her wealth?
  16. Yann04

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

    I agree but the part I was commenting on was meant to be the sentence under where they said they will be basically analysing samples from severe people in priority.
  17. Yann04

    JK Rowling new book — chronic illness references

    Being caricatured as “abusive” given the widespread systemic abuse pwME are facing is particularly despicable.
  18. Yann04

    JK Rowling new book — chronic illness references

    Just discovered this thread. Quite shocked and disappointed to hear about JKR caricaturing pwME basically as an ableist stereotype of lazy malingerers. To think listening to her Harry Potter audiobooks on repeat is what got me through my first “phase” of severe ME (before I lost ability to...
  19. Yann04

    Efficacy of Repeat Immunoadsorption in Post-COVID ME/CFS Patients with Elevated B2-Adrenergic Receptor Autoantibodies - 2024, Stein, Scheibenbogen

    Note that this study didn’t have a control group and therefore had no bliding. And most of the participants had only been sick 1-3 years (median 22 months) which is a timeframe which often coincides with natural improvements. Also, if later on we do learn that this treatment does in fact work...
  20. Yann04

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

    Based on the outrage following the news of the protocol being rejected, I think it’s a good time to share the petition on aocial networks again. I shared it on bluesky following Todd’s accouncment and the post has been getting lots of reposts.
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