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  1. hotblack

    Trial Report Mitigating fatigue in long COVID patients with MYPplus: a clinical observation, 2025, Yu-Jin Choi et al.

    They did measure a few things, the change in TGF-β seems notable? Here’s before, after and change values. TNF-α (pg/mL) 4.9 ± 26.3 4.0 ± 16.6 1.0 ± 13.5 (p = 0.60) TGF-β (pg/mL) 765.0 ± 1759.7 243.9 ± 708.1 521.1 ± 1946.3 (p = 0.07) IFN- γ (pg/mL) 11.7 ± 65.6 33.6 ± 214.3 21.8 ± 148.7...
  2. hotblack

    Trial Report Mitigating fatigue in long COVID patients with MYPplus: a clinical observation, 2025, Yu-Jin Choi et al.

    A bit of info on what is in this preparation Astragali Radix (root) http://www.shen-nong.com/eng/herbal/huangqi.html https://en.m.wikipedia.org/wiki/Astragalus_mongholicus Salviae Radix (root) http://www.shen-nong.com/eng/herbal/danshen.html https://en.m.wikipedia.org/wiki/Salvia_miltiorrhiza...
  3. hotblack

    Learning about genetics and genomics

    I’ve just come across this place which may be useful to some, it’s a bit screen heavy for me but for those who want a visual or interactive learning experience it could be useful LabXChange The Basics of DNA...
  4. hotblack

    Hyper-reactivity of CD8+ T cells and high expression of IL-3 correlates with occurrence and severity of Long-COVID, 2025, Renner et al.

    How broad are these immunosuppressants? I wonder if they’d be taking a sledgehammer to a job better suited to tweezers. If the problem is just some cells or just some signalling, what are the hopes for targeted drugs? Are there any which target just one pathway/cytokine/whatever? Oh dear, I was...
  5. hotblack

    Hyper-reactivity of CD8+ T cells and high expression of IL-3 correlates with occurrence and severity of Long-COVID, 2025, Renner et al.

    When people talk of ‘hyper-activation and hyper-reactivity’ what do they mean/what is the cause? More receptors on cells, more of whatever signalling chemicals being produced, something else, all of the above?
  6. hotblack

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    Checking some old results my alkaline phosphatase level seemed to go up (but very much well within range) after I got ill. Only a few before and after data points and it may be noise. I was always interested in the within normal range changes I saw in blood test results though, not from any...
  7. hotblack

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    I think a lot of people here see knowledge, research as the route to all improvements. So supporting research and funding seems obvious. I really like the way you look at it Kitty. And how we can as patients, be the best participants in any research seems a very worthwhile cause. In various...
  8. hotblack

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    I think I mentioned it earlier but I don’t think it’s a coincidence in terms of the wider political landscape with a multi year departmental spending review, NHS 10 year health plan and yes the ME/CFS delivery plan all due this summer.
  9. hotblack

    Learning about genetics and genomics

    I went down a rabbit hole on Transcription Factors too Text Nature Transcription https://www.nature.com/scitable/definition/transcription-87/ Transcription factors https://www.nature.com/scitable/definition/transcription-factor-167/ Khan Academy Transcription factors...
  10. hotblack

    Learning about genetics and genomics

    I’ve recently found the NHS Genomics Education programme website, which includes a lot of resources, but the Bitesize genomics videos such as ‘What is genomics?’ and ‘What is Bioinformatics?’ are good accessible introductions. https://www.genomicseducation.hee.nhs.uk/education/...
  11. hotblack

    Itaconate modulates immune responses via inhibition of peroxiredoxin 5, 2025, Tomas Paulenda et al

    I’m a bit late to this discussion and can’t access the full paper but from the “how did we get here” overview and ideas about crossovers with other theories people like @jnmaciuch have it sounds really interesting. Look forward to the talk being available somewhere. Happy to help extracting...
  12. hotblack

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    There’s a lot of differing points of view here. And amongst all the proposals, lobbying, charities, researchers… There’s the people I really care about. Patients, us. So I have a quite simple question (although there may not be a simple answer). At this point in time what is the most effective...
  13. hotblack

    How to select trial participants with ME/CFS?

    To get back to the original question… wasn’t one of the points of DecodeME to get a cohort that can be used again? Many of us gave permission not only for data sharing but to be contacted by other researchers. So at least in the UK shouldn’t the answer to the question how do we select...
  14. hotblack

    How to select trial participants with ME/CFS?

    I should have realised you would have :) That asynchronous nature I think works really well for me and others. And I’m absolutely sure there’s plenty of people here who would be happy to help give input or trial methods. I’d be interested in if tools like slack or even simpler IM or forums...
  15. hotblack

    Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

    I wonder if there’s a way of analysing the records of those who consented as part of DecodeME, in conjunction with this data, to perhaps correct for regional variations in diagnosis or recording practices? Thinking about it that data probably holds the same problems as it depends upon a diagnosis?
  16. hotblack

    Understanding disability/impairment, inclusively: the case of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Hunt

    Thanks @Trish Good to know. It felt like the intention was good but I got quickly lost. I say this as a child of someone with a PhD in the social sciences! I understand the need for specialist language to be specific or if describing something new, but sometimes (in all fields to be fair) it...
  17. hotblack

    How to select trial participants with ME/CFS?

    As soon as you say that you are excluding all severe people and probably a lot of moderate. It’s a problem many studies have had, the barriers of entry for people. And something that DecodeME (and the CureME team) did a lot of work to remove, but it was still a lot of work for a lot of patients...
  18. hotblack

    Understanding disability/impairment, inclusively: the case of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Hunt

    Quite funny given they have accessible tools to be able to listen to the article. But then use language to make it quite inaccessible. While talking about how the perspectives of some are excluded.
  19. hotblack

    Housing project for severely ME/CFS sufferers in Neunkirchen-Seelscheid, Germany: Interested parties wanted!

    Nope. Not a modern well fitted external one. I have a portable air conditioner (so a heat pump) and that is noisy! But I have to have it or I get really bad. So I use ear defenders. But it’s not great and I dream of a proper external system. I’ve previously lived in places with proper external...
  20. hotblack

    Learning about the immune system

    Thanks @jnmaciuch :) I’ve added some resources on cytokines and a couple of non-signup/paywalled osmosis resources from youtube for earlier topics. I may play around with layout for the first couple of posts to tidy things up at some point to stop it becoming unwieldy, any recommendations welcome
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