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  1. hotblack

    UK House of Lords/ House of Commons - relevant people and questions

    Interesting phrasing given there are currently no consultants and no treatments and no plans for targeted investment to deliver either in the ‘Delivery Plan’.
  2. hotblack

    United Kingdom: ME Association news

    Looks like the gun fired a little while back, no false start called :)
  3. hotblack

    Genetics: Chromosome 1 NEGR1

    Yeah, it was meant to be a quick ‘oh this info on regulatory elements looks interesting, I wonder if I can knock something up to make it easy to link to and check if there are correlations to changes in the DecodeME data for the candidate genes, maybe it will tell us something’. And then got...
  4. hotblack

    Genetics: Chromosome 1 NEGR1

    Will try to give a fuller writeup a go some other time when I’m up to it. But it’s basically just GenHancer info on promoters and enhancers (see the Genomics section on a GeneCards page) for DecodeME genes with links to view the locations on the DecodeME LocusZoom to see if they’re relevant.
  5. hotblack

    Genetics: Chromosome 1 NEGR1

    Anither update, as well as the window issues I mentioned above, there is a data (well version) mismatch. With GenomeBrowser using older version of the GenHancer database. Hopefully my plan to get the full up to date data and run locally will help, if they give it to me (you need to request it...
  6. hotblack

    Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation, 2025, Birch, Younger et al

    Thought I”d have a quick look at the DecodeME data in this area on LocusZoom Nothing of note immediately apparent around KCNJ18 but scroll along and there’s some peaks, they look far more related to SPECC1 though, what do other people think?
  7. hotblack

    The lack of recognition of ME/CFS as a biological disease in healthcare settings

    It’s really not. It’s incredible simple and I find it condescending to say we don’t understand. Re-read my posts. I have sympathy for the position staff are put in but I again ask you to show me an example of anyone learning any lessons from the countless failures. And recognising that the...
  8. hotblack

    The lack of recognition of ME/CFS as a biological disease in healthcare settings

    I think my frustration and tbh desperation comes through at times. I don’t know what else to try. Who else to ask. I’ve tried all I can think of in every way I can with lots of different people and after each failure I pick myself up and try again, but it follows the same pattern. I think most...
  9. hotblack

    Genetics: Chromosome 1 NEGR1

    Yes, that’s what I was thinking and trying to dig into. I think I’ve noticed a problem in that my scripts look for all TFBS in a region rather than for a gene. This could explain the difference I was seeing and limit my results for enhancers away from the main gene, I’ll investigate and see if...
  10. hotblack

    Severe difficulties with eating in ME/CFS

    How do we change it without unequivocal recognition of the problem? No ifs, no buts, no get outs for people. I suppose I’ve become more hardline again after trying to interact with the NHS. I have an idealistic view of how things could work when I’m at arms length, then when I need them or try...
  11. hotblack

    Severe difficulties with eating in ME/CFS

    I find it telling though that doctors invariably read the bit about CBT and activity planning but ignore the bit about making accommodations and providing low stimulus environments.
  12. hotblack

    The lack of recognition of ME/CFS as a biological disease in healthcare settings

    A large number of posts have been moved from Severe Eating Difficulties in ME/CFS. I get the point. And I absolutely agree that many of these people are not BPS. Ive said before that this is a systemic failure and that we should approach it as that because upsetting individuals egos doesn’t...
  13. hotblack

    Severe difficulties with eating in ME/CFS

    I agree @V.R.T. None of this is necessary and medics could stop it, it really is that simple. We all experience different levels of this daily and some of us have experienced awful things in hospital and there’s never anything learnt, never apologies, never reflection. If our condition was...
  14. hotblack

    Genetics: Chromosome 1 NEGR1

    Yes. And no… I’m a bit confused on this tbh! If you look at the LocusZoom for NEGR1 you can see there’s a little arrow on the label for NEGR1pointing from right to left, that indicates it is read in that direction, so a promoter (that starts the read) would be off in that direction. And thst’s...
  15. hotblack

    Severe difficulties with eating in ME/CFS

    Can you explain what it is you are disagreeing with? Things may be more complicated than expressed on social media but I think the experience all of us have is off neglect by medics. Inexcusable neglect. There is zero reason for defence given what we all face whenever trying to access care...
  16. hotblack

    Genetics: Chromosome 1 NEGR1

    I looked at the promoter and enhancer info from my scripts and few really jumped out, the hits are off in the direction you’d expect of a promoter, but don’t match any identified, but rather the location of lots of other non protein coding RNA, so not sure what to make of this either. Edit: I’m...
  17. hotblack

    John Chia - Clinician/Researcher

    I have no clue about his motives. In my experience as soon as someone’s financial interests are tied in with things to me it does get murky, but that seems to be the way healthcare works in the US. You asked a question and I tried to help by giving some information. But it seems you’re very...
  18. hotblack

    John Chia - Clinician/Researcher

    Didn’t he develop and sell a proprietary herbal supplement based upon Oxymatrine (see my previous post)? Presumably he made or makes money from that? There’s a trademark and a company that seems registered to a family member. https://www.equilibranthealth.com/...
  19. hotblack

    Genetics: Chromosome 13 OLFM4

    That’s pretty much my understanding, although I’m only just learning this! I’d add that in this case the enhancer is within the protein coding region of OLFM4 but enhancers needn’t be. And it’s the products of RCOR1 and EP300 (transcription factors) that bind to the binding site, so as to affect...
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