Search results

  1. hotblack

    Is there a psychological vaccine against untruths?

    I really agree with what @jnmaciuch has said, and put very eloquently. Bottom line is there is no immunity to this. Every one of us is susceptible and every one of us will and do fall into these traps. Sure, some go off the deep end, but recognising we’re all fallible and that you cannot beat...
  2. hotblack

    UK Government ME/CFS Delivery Plan consultation

    Yes, I think it’s worth remembering that many of the lines and challenges are seen with other conditions too. I’ve been watching similar messages about funding and other areas in response to the Parky Charter, which has people with media experience and profiles behind it and a sizeable petition.
  3. hotblack

    Life has less meaning without work, but most work would make me sick

    I’m not sure how much I can help or give advice and can see the challenge but maybe some more questions will help? What are you looking for? A sense of achievement? Structure? Interaction with others? Money? Opportunity to learn? Are you comfortable trying new things out? How about if they...
  4. hotblack

    Does anyone else get a runny nose, sneezing, coughing etc during PEM?

    Difficult to say for sure but my gut reaction would be no. I get it during what for me are milder periods. If I’m generally at the better end of the scale and have a ‘little’ blip I may get this. If I’m bad the problems are different, or maybe I just don’t notice because of all the other issues...
  5. 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.
  6. 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...
  7. 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.
  8. 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
  9. 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?
  10. hotblack

    ME/CFS Springer Protocols

    Really interesting background, thanks for sharing @Nightsong
  11. 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...
  12. 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...
  13. 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...
  14. 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...
  15. 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...
  16. 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/
  17. 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...
  18. 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...
  19. 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...
Back
Top Bottom