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  1. JellyBabyKid

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I have just emailed the editor at New Scientist to very politely enquire why they have not covered the launch of DecodeME as it wasn't in this week's issue either
  2. JellyBabyKid

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Somewhat surprised to see DecodeME doesn't appear to be mentioned in the latest issue (freshly downloaded) either so they might be getting an email from me too.
  3. JellyBabyKid

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Question "misguided division between the objective physical realm, which is construed as real and legitimate, and the realm of subjective experience, which is construed as invalid or derivative." If the subjective experience is considered invalid why are so many BPS studies based on subjective...
  4. JellyBabyKid

    Is your "startle reflex” super sensitive?

    Yes, but I also have anxiety and tend toward hypervigilance. The anxiety accompanied a worsening of ME symptoms so a bit chicken and egg...
  5. JellyBabyKid

    DecodeME - UK ME/CFS DNA study underway

    This is also discussed on this thread; https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19.14074/page-30#post-269795 And I have just posted the last two paragraphs of this article on the thread, which was post #591
  6. JellyBabyKid

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    The penultimate paragraph was interesting and hopeful. The last one was thoroughly relatable" "Until now, much of the response to covid-19 has been about preventing deaths, but hospitals are beginning to establish clinics to follow-up the survivors - including those who are still ill. "I'm...
  7. JellyBabyKid

    DecodeME - UK ME/CFS DNA study underway

    Good point, but would have expected it to be om their website as that is updated more often
  8. JellyBabyKid

    DecodeME - UK ME/CFS DNA study underway

    Just downloaded this week's New Scientist (thank you to my local library) and it seems really odd that so far I can see no mention of this in the news section. Or on the website. They are normally all over genetic projects.
  9. JellyBabyKid

    UK: Priority Setting Partnership for ME/CFS

    Clicking on the tweet leads to a message that says "this tweet is from an account that has been suspended"
  10. JellyBabyKid

    DecodeME - UK ME/CFS DNA study underway

    Thank you :thumbup:
  11. JellyBabyKid

    DecodeME - UK ME/CFS DNA study underway

    That's great, thank you :thumbup:
  12. JellyBabyKid

    DecodeME - UK ME/CFS DNA study underway

    This took me to a tweet...
  13. JellyBabyKid

    DecodeME - UK ME/CFS DNA study underway

    Can someone post Tom Whipple's piece? I have maxed out my 2 free articles. Thanks.
  14. JellyBabyKid

    Editorial: Transcutaneous electrical nerve stimulation (TENS) for chronic pain: the opportunity to begin again : Travers, Eccleston et al Apr 2020

    I love my TENS machine and find it has been incredibly helpful. Physio who originally suggested it (for chronic post operative pain, not ME) claimed it was only worked for 25% of people. For once, the odds were in my favour! :)
  15. JellyBabyKid

    UK Action: Ask CCGs to buy MEA Purple Books for GP Surgeries

    Thank you @Invisible Woman . Glad to know i was making some sense! Excellent point about seeing GP's - I shall try and remember to make this point to mine when I see her next. None of it is good enough and it is doubly frustrating as it has gone on so long and shows little sign of changing.
  16. JellyBabyKid

    UK Action: Ask CCGs to buy MEA Purple Books for GP Surgeries

    I can totally understand that, and my GPs are clearly drowning in work, but I find it frustrating that once again ME comes bottom of the pile and it's not seen as serious enough to be priority reading. With no treatment and no way of identifying who might develop it, surely more than having it...
  17. JellyBabyKid

    UK Action: Ask CCGs to buy MEA Purple Books for GP Surgeries

    I actually did this and got the ME Association to send a copy to my Practice. One GP told me he was too busy to read it and another said it was still on her desk to read...
  18. JellyBabyKid

    UK: Mentally ill 'spend months on hidden waiting list'

    This was also reported on Radio 4 Today and the NHS representative advised the these "hidden" waiting lists are published regularly and that the majority of patients recover significantly. Only one of the people from this article was included in the piece.
  19. JellyBabyKid

    BBC programme You and Yours: Are you dependent on prescribed painkillers?

    I haven't listened to this yet but I will as I find the all or nothing approach to some of these drugs frustrating. After surgery I refused to have morphine when I came home as I knew it could be addictive and didn't want to risk it. My GP has provided short term courses of Tramadol when...
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