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  1. hotblack

    New Nasal Vaccines for COVID, Flu and RSV in development

    An interesting article on nasal vaccine development, how they work and may offer better protection https://www.scientificamerican.com/article/new-nasal-vaccines-offer-stronger-protection-from-covid-flu-and-more-no-needle-needed/
  2. hotblack

    Severe ME/CFS: preventing the physical consequences of prolonged immobility

    I have not found any physio support helpful for the reasons you can imagine. But I remain hopeful physios can help those of us with limited mobility in the future. Thankfully no issues with bed sores, but I am able to move around a bit except when at my worst. Lots of other issues which some...
  3. hotblack

    Herbal extract (Cervus elaphus Linnaeus, Angelica gigas Nakai, and Astragalus membranaceus Bunge) ameliorates chronic fatigue:... 2024 Ahn et al

    I dug into this more as it mentioned changes in creatine kinase and that’s been mentioned in other studies. But if I’m looking at the data correctly both groups seem to show changes here over time (from week 2 to week 8) more significant than between placebo and treatment groups? As @Andy and...
  4. hotblack

    What do people want me to ask Sonya Chowdhury on Friday

    There’s some more info in this thread.
  5. hotblack

    Herbal extract (Cervus elaphus Linnaeus, Angelica gigas Nakai, and Astragalus membranaceus Bunge) ameliorates chronic fatigue:... 2024 Ahn et al

    “Kwangdong Pharmaceutical is a company that aims to provide healthy life and human health care by combining oriental and western medical science. It has a vision of achieving 1 trillion corporate value, sales, and operating profit by 2020” Quote from the company’s website. The 1 trillion is...
  6. hotblack

    Thesis Enhancing inclusivity in human-computer interaction through the implementation of temporal uncertainty tools, 2024, Bowler

    Here’s an AI generated audio summary of the paper: https://u.pcloud.link/publink/show?code=XZduWi0ZTdhxTQF6uuVEGoFdlRdTqL2VkeIy So I don’t completely derail discussions of the papers please post any feedback on these audio summaries to this thread...
  7. hotblack

    Immunometabolic changes and potential biomarkers in CFS peripheral immune cells revealed by single-cell RNA sequencing, 2024, Sun et al

    A very small sample size but a lot of information to take in! Here’s an AI generated audio summary of the paper: https://u.pcloud.link/publink/show?code=XZ6HWi0ZBMorHqJoUY7MyiDX6LMnPBiwpM17 So I don’t completely derail discussions of the papers please post any feedback on these audio summaries...
  8. hotblack

    Multi-ancestry GWAS of [LC] identifies immune-related loci and etiological links to [CFS], fibromyalgia and depression, 2024, Chaudhary et al

    Yes it’s an audio summary, sorry if that wasn’t clear. I can easily post the text too if people prefer? (quoted below) So I don’t completely derail discussions of the papers maybe people can post feedback to this thread...
  9. hotblack

    Trial Report Muscular metabolic plasticity in 3D in vitro models against systemic stress factors in ME/CFS and long COVID-19, 2024, Mughal

    It does sound interesting and a few other studies pop into my mind when reading the abstract. (Those that looked at membrane potential and the electrical properties of cells, muscle function and grip strength, etc). But as @Jonathan Edwards mentions there really is such scant information I...
  10. hotblack

    Multi-ancestry GWAS of [LC] identifies immune-related loci and etiological links to [CFS], fibromyalgia and depression, 2024, Chaudhary et al

    As part of an ongoing experiment here is a summary of the paper (AI generated and read). I often find these more useful than the Abstracts but feedback welcome https://u.pcloud.link/publink/show?code=XZ7bjv0ZGbw7qqyhtlYym4OQ1XuaYyuR1l77
  11. hotblack

    What do people want me to ask Sonya Chowdhury on Friday

    Thank you @Jonathan Edwards and Sonya
  12. hotblack

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    Very interested in all your comments. I use ear defenders and under them wired in ear headphones in the day when needed. There’s good white/pink/dark/whatever colour you want noise generators as apps or built in to most devices these days. But am looking for alternatives for the future. I look...
  13. hotblack

    United Kingdom: 'Dr Finlay's Clinic' for Long Covid, Dr Ben Sinclair

    Maybe it’s cynical of me but perhaps it depends on his target market? Providing a premium service to premium customers who believe in shall we say, unproven technologies.
  14. hotblack

    United Kingdom: 'Dr Finlay's Clinic' for Long Covid, Dr Ben Sinclair

    The Internet Archive (who run the Wayback Machine at web.archive.org) is confusingly different from archive.today (and their other urls like archive.ph) so I don’t think that’s the issue people are experiencing https://en.m.wikipedia.org/wiki/Internet_Archive...
  15. hotblack

    United Kingdom: 'Dr Finlay's Clinic' for Long Covid, Dr Ben Sinclair

    There’s some longstanding archive.today issues with certain DNS providers (particularly cloudflare but maybe others). It’s complicated and involves a disagreement between the two parties but if you’re having issues you could try using alternative DNS servers. A couple of examples...
  16. hotblack

    What do people want me to ask Sonya Chowdhury on Friday

    The big question I’d like to see asked is who takes responsibility for the patient and their ongoing needs? The specialist service? The GP? Having clearer visibility of this would be useful I think. Even if I think we know the answer…
  17. hotblack

    What do people want me to ask Sonya Chowdhury on Friday

    It is going off topic but I may as well join in. As well as covid being ongoing there is a not insignificant number of us with ME who have terrible reactions to the covid vaccines (but not other vaccines). This is a problem in itself as we can’t get vaccinated so are at risk. But it also seems a...
  18. hotblack

    Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

    As so often I think @Kitty has put it well. I agree. Pleased with how Sonya responded. We need to find a way for a group to have input rather than it falling on an individual (a bit like some of the suggestions for patient participation in research). I understand this is hard.
  19. hotblack

    What do people want me to ask Sonya Chowdhury on Friday

    Short experience I had with them before AfME took over was while some people initially seemed good they turned out to be completely inflexible. As far as getting advice from a Dr they refused to deviate from the hour long appointments or discuss methods of communication that would work for me...
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