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  1. hotblack

    If a cure for ME/CFS was found tomorrow, would our GPs reach out to tell us?

    I’m not sure the mechanisms exist to do that though. Or that medics would respond well to attempts to do such things. There may be advice from NHS England and if there is strong evidence this may be supported by guidance from NICE… But it relies upon different people in different places making...
  2. hotblack

    If a cure for ME/CFS was found tomorrow, would our GPs reach out to tell us?

    It would depend entirely upon the GP. Or local integrated care boards. What NICE advises, if people follow that advice and what services the boards think they need and if they commission them… (Sorry I’m probably half answering your other post but they seem very linked in terms of NHS structures)
  3. hotblack

    How quickly could an effective drug treatment for ME/CFS be rolled out once approved?

    What would happen? Meetings How would it be rolled out? Unevenly I don’t mean that as a pessimistic view but that is usually how things go, even in the best cases. The covid vaccine example you gave shows what is possible, but it involves bypassing a lot of things so is unlikely to happen. And...
  4. hotblack

    Supplements containing as much as 12.5 times the recommended safe upper limit of popular vitamins and minerals sold on online marketplaces, Which?

    The lesson seems to be, don’t buy anything like this from any online marketplaces. Regulations in the UK and EU are generally quite good for medicines, food, etc. but we seem to let some companies ignore them.
  5. hotblack

    Hamilton robotics grant

    Generous offer by the company and by you @ChronicallyOverIt thank you! Would love to see someone who can make use of this take you both up on it.
  6. hotblack

    Norwegian Fluge & Mella daratumumab Haukeland trial 'ResetME' now accepting international donations

    Great work and thanks again @Joan Crawford Good luck for the ride this weekend. Could be a bit of wind around, hopefully enough and in the right direction to give you a helping hand rather than cause any trouble.
  7. hotblack

    NHS England - E-learning Modules on ME/CFS

    Great, glad that helped @Jonathan Edwards Look forward to hearing more about the module and how your efforts at addressing any shortcomings go
  8. hotblack

    NHS England - E-learning Modules on ME/CFS

    Sounds like it could be your browser blocking a pop up window, as those are often used by nasty ads. Most browsers allow you to disable it for a website. Here’s the instructions for Chrome or let us know what browser you’re using and we may be able to help. Edit: Here’s guides for different...
  9. hotblack

    Development and validation of blood-based diagnostic biomarkers for [ME/CFS] using EpiSwitch®… 2025, Hunter et al. (Oxford Biodynamics)

    I’m sceptical of the value of this commentary. It’s not from someone without their own conflicts of interest. It’s a website of a Chiropractor and Nutritionist writing on a website they run as a business to make money out of patients by claiming they can help them. It’s full of the buzzwords and...
  10. hotblack

    Mike's EU Marathons

    I suppose the other aspect is what you’re into and perhaps where the interest from others is? Ultras and backyards seem to have a bit of a cult following and quite a social and community aspect too which may be something you/we could tap into? There seems to be no shortage of events around the...
  11. hotblack

    United Kingdom: Sussex & Kent ME/CFS Society News

    To be fair that is a problem with those doing the commissioning of services not the clinics (the clinics have a whole load of other problems). Getting the Integrated Care Boards to both understand the needs of the populations they serve and what services are appropriate may be the best route...
  12. hotblack

    Sex-related cardiometabolic differences in ME/CFS patients, 2025, Hofmann, Sepúlveda, Westermeier+

    Same. I have a lot of v unpleasant cardiovascular symptoms when bad. And have tried HR, BP and HRV to monitor. There’s something here I’m sure, but am not sure of the reliability of these measurements to demonstrate the relationship or of his methodology or the estimation formulas used. They do...
  13. hotblack

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

    Probably my fault by linking to the Wikipedia page for Baroness Scott of Bybrook rather than Baroness Scott of Needham Market. Thanks for the correction @Suffolkres
  14. hotblack

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

    Me either, Wikipedia has write ups for them both Baroness Scott (of Needham Market) Lord Bethell
  15. hotblack

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

    Link to the PDF from the House of Lords Appointment Commission on the appointments made. The website has more info on how these appointments are made.
  16. hotblack

    Updates from the UK ME/CFS Biobank / CureME team

    There’s a story on this from the MEA now too The winners are as above, there were 20 applicants and there’s a bit more info on the projects. Selected quotes below
  17. hotblack

    United Kingdom: Sussex & Kent ME/CFS Society News

    Sorry you’ve been through this experience @CamTi it is sadly not at all uncommon
  18. hotblack

    United Kingdom: Sussex & Kent ME/CFS Society News

    As far as I can tell it’s an odd organisation, that seems to be funded by but also promotes small businesses and has some sort of magazine. Their website is an odd one too https://prestigeawards.co.uk/ Part of this media company https://fenicemedia.com/ So I’m not sure I’d call them an awarding...
  19. hotblack

    A brief, comprehensive measure of post-exertional malaise, 2025, Jason and Chee

    It looks to me to be an okay study of somehing. I just don’t think that something is necessarily PEM. It may be PEM if you can be sure what everyone is describing is PEM. But by the nature of the design we do not know that it is. Given people also use these surveys to distinguish PEM and...
  20. hotblack

    Rolling Stone Magazine: Long Covid Is Real — and It’s Changing an Entire Generation

    I guess that’s a pattern we commonly see with many issues which face disbelief. First people have to admit there’s a problem. Then they have to admit they don’t understand the problem. Only then can people start to understand it.
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