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  1. Hutan

    Closed UK: School Experiences for Young People with ME/CFS

    Welcome to the forum Ellen, and thanks very much for your interest in the experiences of young people with ME/CFS. Can you tell us, how did you come to choose your research project? How big a project is it - is it just a part of your PhD work or is it the main focus? How many people are you...
  2. Hutan

    Open GEM study - Prevalence of genetic diseases in ME/CFS patients, 2022, Esther Crawley, Bristol University

    Looks as if they get your medical records as well as genetic data and the 20 minutes of questionnaires. It might all be legitimate, but it's just that Crawley was such a key part of MEGA. I wonder if all the medical records and questionnaire data goes along with the DNA into the Bristol data...
  3. Hutan

    Open GEM study - Prevalence of genetic diseases in ME/CFS patients, 2022, Esther Crawley, Bristol University

    "Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date. The recruitment start and end dates are as follows: 01 Sep 202230 Sep 2024 Participants are asked to complete one questionnaire and provide a saliva sample via...
  4. Hutan

    Modern environmental factors

    There is the example of Long Ebola. I am certainly no expert in the living conditions of the areas where there have been Ebola epidemics, but I suspect life there for many people is different to what it is for many S4ME members. And yet, we see a substantial incidence of ME/CFS-like illness...
  5. Hutan

    Prevalence of somatic symptoms among Ebola Virus Disease (EVD) survivors in Africa: a systematic review and meta-analysis 2024 Mandizadza et al

    Answering my own question, see this: From bedside to patient: An Ebola survivor's odyssey, 2015 about a US doctor who had Ebola. He was extremely sick, and had strokes that may of course account for lingering symptoms. He also had proven viral persistence. But, it is also very clear that he...
  6. Hutan

    Prevalence of somatic symptoms among Ebola Virus Disease (EVD) survivors in Africa: a systematic review and meta-analysis 2024 Mandizadza et al

    Interesting to read, although inconsistent approaches in the various studies make the meta-analysis of limited utility. In the discussion of possible causes, viral persistence and a 'hit and run' phenomenon caused by the immune reaction are included. It is noted that there are no controls, and...
  7. Hutan

    'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]

    I assume there is a Goldsmith ethics committee approving this study? Seems they need to take a long hard look at what they are doing.
  8. Hutan

    Plasma taurine level is linked to symptom burden and clinical outcomes in post-COVID condition, 2024, Khoramjoo et al.

    This is a study with mostly older hospitalised patients with a range of comorbidities and medication regimes. The adverse events are all sorts of things. The investigators measured lots of metabolites and other molecules. 47 cytokines, chemokine, growth factors 274 human proteins 635...
  9. Hutan

    Chronic fatigue syndrome post-COVID-19: triple-blind randomised clinical trial of Astragalus root extract 2024 Banihashemi et al

    (I have a soft spot for astragalus. I don't know why. I've boiled up astragalus roots and drunk the tea sometimes, just because. I can't say that I noticed it did anything, good or bad, but if someone gave me an astragalus tonic from a reputable brand, I'd probably drink it. Which is to say, I...
  10. Hutan

    Chronic fatigue syndrome post-COVID-19: triple-blind randomised clinical trial of Astragalus root extract 2024 Banihashemi et al

    What are they actually saying here? It looks like there was 13.8% less chronic fatigue in the treatment group after one month of treatment. But was the incidence of chronic fatigue in the control group after the treatment 72.2% of what it was before? So 27.8% less chronic fatigue in the control...
  11. Hutan

    Chronic fatigue syndrome post-COVID-19: triple-blind randomised clinical trial of Astragalus root extract 2024 Banihashemi et al

    I actually did laugh out loud when I saw how well they did in not extrapolating beyond their sample population. Presumably, never mind ongoing exposure to Covid-19, never mind probably inadequate protective equipment and ventilation. Just have some astragalus.
  12. Hutan

    A disease-associated gene desert directs macrophage inflammation through ETS2 [in IBD] 2024 Stankey et al

    Step 1 - see Fig1a - the blue spike Step 2 They viewed all five of the disease as immune mediated, so, they looked for genetic enhancers acting on immune cells Step 3 Find the gene regulated by the enhancer (I'm not sure how they concluded the following as a supporting fact , but there...
  13. Hutan

    A disease-associated gene desert directs macrophage inflammation through ETS2 [in IBD] 2024 Stankey et al

    You may well be right that this paper doesn't have the answer to IBD etc, although I still like the effort made to find a solution. I think they are quite careful not to call IBD an autoimmune disease. I think the point they are making in that paragraph above is that genetics can help with the...
  14. Hutan

    A disease-associated gene desert directs macrophage inflammation through ETS2 [in IBD] 2024 Stankey et al

    :D Reading this paper makes me more hopeful. I don't understand a lot of this, but there's a logic to the process, things were approached from different angles to check ideas still made sense, and they clearly have great tools. It's a million miles away from the 'fill the gaps in knowledge...
  15. Hutan

    A disease-associated gene desert directs macrophage inflammation through ETS2 [in IBD] 2024 Stankey et al

    So, the combination of a susceptible gene, and the non-coding variant that regulates that gene and, possibly, certain environmental conditions are needed to result in disease. Gene desert = sections without coding genes, but it's increasingly understood that they aren't just junk DNA, but...
  16. Hutan

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Ha, that's probably an unsafe assumption, given the NHS is trialling the Lightning Process. But, for sure, wearables are being used in a whole range of health contexts around the world and it's widely recognised that they provide advantages in data accuracy that questionnaires do not...
  17. Hutan

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

    We sent Österreichische Gesellschaft Für ME/CFS an email in English in September last year, and an email in German last year, to contact@mecfs.at. Both received automated responses. If anyone can help us reach decision makers in the association, or give us an alternative email address, that...
  18. Hutan

    News from The Netherlands

    Announcement of a further Euro2.5 million in research funding: The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023
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