Recent Activity

Activity stream for all registered members at Science for ME.

  1. Jonathan Edwards replied to the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.

    It looks to me as if someone has twigged to the potentially very serious issue of Dr Kane being seen to be treating children without...

    Jun 12, 2024 at 4:45 PM
  2. EndME liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    EDS is a group of monogenic genetic diseases, most of which we know the gene for and are easily tested for. There are 13 main types....

    Jun 12, 2024 at 4:42 PM
  3. Trish liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    EDS is a group of monogenic genetic diseases, most of which we know the gene for and are easily tested for. There are 13 main types....

    Jun 12, 2024 at 4:39 PM
  4. Yann04 liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    EDS is a group of monogenic genetic diseases, most of which we know the gene for and are easily tested for. There are 13 main types....

    Jun 12, 2024 at 4:38 PM
  5. Jonathan Edwards replied to the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    EDS is a group of monogenic genetic diseases, most of which we know the gene for and are easily tested for. There are 13 main types....

    Jun 12, 2024 at 4:37 PM
  6. Yann04 liked Joan Crawford's post in the thread : TV casting call for people living with ME/CFS.

    I blanked out the presenters mentioned. Janet is I think a producer or similar.

    Jun 12, 2024 at 4:37 PM
  7. Yann04 liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical...

    Jun 12, 2024 at 4:36 PM
  8. Trish liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical...

    Jun 12, 2024 at 4:36 PM
  9. Fainbrog liked MrMagoo's post in the thread : TV casting call for people living with ME/CFS.

    I really, really hope you ge a polite apology. I’m sure they think they’re being brilliantly inclusive. I wonder whether they would be...

    Jun 12, 2024 at 4:34 PM
  10. Fainbrog liked Joan Crawford's post in the thread : TV casting call for people living with ME/CFS.

    Dear Joan, I’m contacting you from Electric Robin, an award-winning UK-based creative production company. You can find out more about...

    Jun 12, 2024 at 4:34 PM
  11. Jonathan Edwards replied to the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical...

    Jun 12, 2024 at 4:32 PM
  12. Yann04 replied to the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    Out of curiosity what’s the issue with EDS. Isn’t it a group of genetically testable diseases — which would make the diagnosis...

    Jun 12, 2024 at 4:29 PM
  13. Yann04 liked Mij's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    A couple of days ago on X there was a patient dx with M.E who posted information about CCI/AAI, MCAS, EDS that received many replies...

    Jun 12, 2024 at 4:27 PM
  14. Yann04 liked Solstice's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    Also, if they don't want us shopping for help, then get us the help we need through the proper channels.

    Jun 12, 2024 at 4:27 PM
  15. Yann04 liked Trish's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.

    If all the patient organisations, organisations like NIH, and the doctors whose advice they promote would stop suggesting EDS, MCAS,...

    Jun 12, 2024 at 4:26 PM
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