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  1. JemPD

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

    I *think* Charles Shepherd also mentions it in his book. Will see if it can find it later
  2. JemPD

    UK - Resources for help getting food during quarantine and other supermarket related problems

    Have just logged into my asda account as normal @Wonko I'm using the latest version of Edge. I dont, to my recollection, have a george account though, not with my current email at any rate
  3. JemPD

    Sleeping in hot weather

    Thanks @Invisible Woman :):hug:
  4. JemPD

    BPS attempts at psychologizing Long Covid

    It is. I dread it happening to someone close to me
  5. JemPD

    Sleeping in hot weather

    @Invisible Woman what are these dog cooling mats? I never heard of them will have to investigate
  6. JemPD

    Sleeping in hot weather

    I use doxylamine succinate 25mg, the brand i use is kirkland sleep aid. i bought it from the US but i dont know if it's available on it's own in uk. Its an old fashioned anti-histamine like the non-herbal version of nytol (which is diphenhydramine) but i find it much more effective than that. It...
  7. JemPD

    DecodeME - UK ME/CFS DNA study underway

    loving all those suggestions @MSEsperanza
  8. JemPD

    Covid-19 - Psychological research and treatment

    I think she needs to go back to being JE's trainee. From her presentation - I know i shouldnt less this ignorance upset me but the cold cruelty of it cuts deep. All that i have lost, the horror and pain of being ill & disabled, the daily griefs of being excluded and unable to live as the...
  9. JemPD

    Question: Coronavirus & home sewn masks?

    continually touching them isn't a good idea anyway, they are being unwise when they do that imho - unless your hands are scrupulously clean you could just be putting virus particles off your hands & onto the mask... ready to be inhaled, or just deposited onto your face from the mask, or even...
  10. JemPD

    Why patients have difficulties avoiding excessive exertion

    Why do we have difficulties avoiding excessive exertion? I'm surprised you ask! Do you not know that it is that pesky kinesophobia, our fear/phobia of movement that causes us to do so much?! Surely you have been around long enough to know that. Sorry @strategist :whistle: I couldnt resist...
  11. JemPD

    Covid-19 - Psychological research and treatment

    Oh for goodness sake. these will be the ones that "up to 30% tested negative, proving that it was unhelpful beliefs causing their symptoms" 'err.... cough.... but the test is only about 70% reliable'.......... 'stop with your activism & harassment, we are being forced to leave the field!'
  12. JemPD

    A general thread on the PACE trial!

    Response to a deleted discussion of a deleted tweet. As i recall, PACE & FINE were definitely described as 'sister' trials back in the late naughties. Sorry i dont have a ref for that but i do remember it being 'common knowledge' at the time. So someone in the FINE arm could quite easily have...
  13. JemPD

    Covid-19 - Psychological research and treatment

    From the above document Just shows how utterly ignorant she is about the experience of having a not-yet-proved-organic disease. People dont generally consider people with ME brave, despite the reality of them being so, precisely because of the shite that people like you peddle! What kind of...
  14. JemPD

    Pacing - what do you do/how would you describe it?

    This. Friend: "well why did you do that Jem? That is so obviously too much why did you carry on/do that extra thing when you know it makes you ill?" Me: " Well because by that time i was too confused/disoriented to recognise the signs to stop/not do it...
  15. JemPD

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

    So he's retweeted an article containing a link/recommendation to Nina Muirhead's course? hehe i'm guessing that was inadvertent ;)
  16. JemPD

    Coronavirus - worldwide spread and control

    They also often speak at full volume as the norm, shout and scream... a lot!
  17. JemPD

    Pacing - what do you do/how would you describe it?

    This Also here is my 'twopenneth' Pacing, it's ruddy awful, takes huge self control & is a right pain in the arse. But essential. You need a lot of will power to resist doing what you really want/need to do. It's been nearly 20yrs & i STILL find it hard to resist the idea that i can just...
  18. JemPD

    A general thread on the PACE trial!

    eww :sick: reading those quotes again makes me feel sick. One forgets how bad it was. I mean not forgets of course, i know very well how bad it was & is, we're all living it, impossible to forget. But when you read it again after a few yrs... ugh it makes my blood run cold. My goodness when...
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