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  1. JellyBabyKid

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

    Update: I have had a lovely email from the New Scientist. They don't tend to report on project launches, preferring to report on results. They have made a note to keep an eye on this project.
  2. JellyBabyKid

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

    Having a skim of this week's contents on the website : https://www.newscientist.com/issue/3292/ it's looking like my email didn't make any difference. Will double check when I download it tomorrow though.
  3. JellyBabyKid

    Waking up in the night and hearing a brain-generated sound

    I have had the sensation of my head feeling like it was actually exploding once while falling asleep. I have had tinnitus for about a year (different tone in each ear) i also get the extreme loud whine for a few seconds that then dissipates fairly regularly as well. I have that auditory...
  4. JellyBabyKid

    United Kingdom: North Bristol NHS Trust: ME/CFS clinic

    I think the idea is to teach people to be more "in the moment" and learn acceptance. It has been shown to be helpful in depression and pain management (Jon Kabat-Zinn has been credited for introducing it to the west and using it in this field, with good results) Personally i would feel...
  5. 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
  6. 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.
  7. 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...
  8. 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...
  9. 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
  10. 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...
  11. 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
  12. 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.
  13. 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"
  14. JellyBabyKid

    DecodeME - UK ME/CFS DNA study underway

    Thank you :thumbup:
  15. JellyBabyKid

    DecodeME - UK ME/CFS DNA study underway

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

    DecodeME - UK ME/CFS DNA study underway

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

    DecodeME - UK ME/CFS DNA study underway

    Can someone post Tom Whipple's piece? I have maxed out my 2 free articles. Thanks.
  18. 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! :)
  19. 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.
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