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  1. hotblack

    Personal project: Sick Genes, a website for compiling significant gene findings from studies on ME/CFS and other conditions

    I suppose in those borderline cases it’s probably best to cast the net wider and have more in there than less? It can always be narrowed down later, when someone digs more into a paper/when experts are using it and provide feedback that a gene isn’t relevant/appropriate for inclusion.
  2. hotblack

    Personal project: Sick Genes, a website for compiling significant gene findings from studies on ME/CFS and other conditions

    That makes sense. Thanks for sharing and for outlining your process. Cooperative efforts and certainly supporting them can be a lot of work. And I understand the difficulty over criteria, ultimately the quality of the data in the database is the valuable part. Maybe there’s scope for a well...
  3. hotblack

    Personal project: Sick Genes, a website for compiling significant gene findings from studies on ME/CFS and other conditions

    Impressive, nice work @forestglip I wonder if it would be possible for others to help out? Spread the workload and crowd source the effort.
  4. hotblack

    Twin with ME/CFS wants to be a research subject

    This must be the King’s department mentioned? https://www.kcl.ac.uk/slcps/our-departments/department-of-twin-research-genetic-epidemiology Edit: Oh I think @Jaybee00 got there via a different route
  5. hotblack

    Twin with ME/CFS wants to be a research subject

    Presumably because not all twins are genetically identical and for those that are it can help understand the non-genetic factors?
  6. hotblack

    ME/CFS Springer Protocols

    Really interesting background, thanks for sharing @Nightsong
  7. hotblack

    Closed UK: DecodeME updates, was recruitment thread.

    To partially answer my own post, the data analysis plan says they can perform analysis on co-occurring conditions with “stratum of at least 1000 samples”. So the mild/moderate vs severe comparison may be possible. It would be really interesting to know if any genetic signal is strengthened or...
  8. hotblack

    Association between Adverse Childhood Events ACEs and long-term COVID-19 symptoms…, 2025, Elkefi et al.

    Or perhaps those who had poor childhood experiences were also living in poor condition which impacts their health? As far as the pandemic went all those who were able to get their wages paid, work from home while hanging out in their gardens no doubt had very different experiences from those...
  9. hotblack

    Closed UK: DecodeME updates, was recruitment thread.

    I have been thinking about the data analysis plan again in light of recent discussion of studies focussing on more severely affected people. There are plans for all sorts of analysis, including stratified analysis for things like sex, co-occurring conditions, onset, etc. but there’s no mention...
  10. hotblack

    Frustrated, but Motivated: Insights from People with ME/CFS, 2025, Rathmann, Jason et al

    Definitely. And that alone could be really useful. I know this forum has helped me be more confident and sure of myself. Having published literature back it up is useful. It’s so easy to be isolated and think you must be the only one thinking or wanting xyz, especially with such an isolating...
  11. hotblack

    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    Yes, looking over the paper there seems to be a lot of similarities outside of these very specific differences too. For instance: I like the questions @wigglethemouse has been been raising. Hopefully things will make more sense with greater context and information, maybe even after...
  12. hotblack

    Mighty mitochondria: Cell powerhouses harnessed for healing

    An article on mitochondria transplants https://knowablemagazine.org/content/article/technology/2025/mitochondrial-therapy-to-treat-damaged-organs Here’s the relevant paper https://pmc.ncbi.nlm.nih.gov/articles/PMC11615905/
  13. hotblack

    Preprint Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    I’ve been back over the webinar and parts of the paper and it certainly raises lots of thoughts or half formed questions, particularly in light of the paper Jackie contributed to with @Jonathan Edwards and Jo. That would seem to fit the severe or ‘over sensitive’ ‘over reactive’ immune subtype...
  14. hotblack

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

    @Jonathan Edwards would the elispot/co-culture experiments proposed be possible on already collected blood samples, like those in the CureME biobank? Those are what Jackie was using for previous studies of T cells iirc, but I think they were using flow cytometry and I have no idea about these...
  15. hotblack

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

    I assume it would just depend which nerves/cells/bits are sensitised. There is a great deal of variation between us. So I wouldn’t expect there to need to be a clear correlation. I didn’t think I had any medication sensitivities but then found some seem to set me off. Some seems like a more...
  16. hotblack

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    Some may not feel they need it but I would welcome advice. There are parts I see being easy/natural. I’ve recovered from illness that has reduced activity significantly for many months before. But other parts I see being less easy. And advice from an expert would be useful for me whatever. I’m...
  17. hotblack

    How should biological researchers present their results about ME/CFS to the media - discussion thread.

    A bit late to this but some thoughts… It’s a tricky one, overall I like the approach others laid out about sticking to the science being presented. Part of me would like to take things head on. The history is important in terms of context, but perhaps only for those having to deal with people...
  18. hotblack

    Brain fog, cognitive dysfunction

    I do enjoy Poirot :) (Although the audiobooks these days)
  19. hotblack

    UK Government ME/CFS Delivery Plan consultation

    I’m obviously not happy that the plan is so late and keeps getting pushed back. But perhaps an alternative angle to consider is once we have DecodeME and understand the NHS 10yr plan we’ll be in a much better place to say what works and what doesn’t. We will be able to better push back against...
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