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  1. JemPD

    The BDS checklist as measure of illness severity: a cross-sectional cohort study...., 2020, Fink et al

    I meant that more literally @Andy ie does anyone know what the checklist actually is - ie a link to it, or know what is on it?
  2. JemPD

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

    absolutely. I also frankly find it frustrating when people talk about 'difficulty concentrating' because that is something i experience when anxious - easily distracted, cant keep my mind on what i'm supposed to be doing & so just unable to pay attention... Which is qualitatively 'chalk &...
  3. JemPD

    Who is Simon Wessely?

    thanks for that @Barry I didnt write that quite accurately then as there is ambiguity. But IIRC when i was reading about it all (circa 2006) it was being seen (among those writing about it, i'm sorry i dont remember the details of whom etc), it was interpreted that SW had decided EP could not...
  4. JemPD

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    MArvellous as it is @Natalie :) but just a suggested change (in blue) As i'm sure you're only too well aware, many well meaning Drs/care givers think they understand but dont, and think they can help you by increasing your exposure & 'getting you used to it'. When i was mild - enough to ignore...
  5. JemPD

    DecodeME - UK ME/CFS DNA study underway

    Great, thanks, thats good enough for me :)
  6. JemPD

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    Also just to say that i got the bose in- ear ones as well and they are not nearly as good, they also made me feel very dizzy & sick & gave me a headache & made my tinnitus worse. I tried several times as i wasnt expecting to have those problems, but i couldnt get on with them at all - must be...
  7. JemPD

    DecodeME - UK ME/CFS DNA study underway

    I was initially a bit concerned by this development.... Are you happy with this @Andy ?
  8. JemPD

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    Smart Noise Cancelling Headphones 700 | Bose mine are these they are fantastic, but pretty pricey at £350there is a 90 day satisfaction guarantee if you get them from Bose though, so if dont like/not worth it for any reason can return for full refund. you can get them atm from amzon for £269...
  9. JemPD

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I came here to say just exactly this :) I'd hoped to get a bit further but am sliding down the wall. Huge thanks to everyone involved.
  10. JemPD

    Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

    Hi Woolie not sure whether the statement you hate is my statement or whats implied in the study. So just to clarify i am not suggesting that any kind of unhealthy behaviours are to blame, for my, or anyone else's ME. I was just making the point that I for one would not choose to live the way i...
  11. JemPD

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

    My main issue with it, apart from the issues you raised, was her repeated use of the advice to 'be selfish' as if self care were selfishness, reinforcing the meme that PwME are selfish & self absorbed. Its really not how i want to see my devastating illness represented. The BBC's focus on...
  12. JemPD

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

    Oh dear. Video on BBC news website this morning Long Covid: How knowledge of ME could help sufferers - BBC News Woman looking fabulous recommending that people 'be selfish' I mean i know what she's trying to say & that perhaps the editing has created something other that she'd have liked...
  13. JemPD

    BPS attempts at psychologizing Long Covid

    From the blog It would be more accurate to say that patients & professionals convinced NICE to look at the evidence for GET in an unbiased manner.... Evidence which they deemed to be - without exception - of either low or very low quality. Therefore NICE have no basis for recommending it. We...
  14. JemPD

    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    This. From all the nonsense in her book TC seems to honestly believe that CFs = feeling very tired & sleepy, and a bit achy, and generally mentally & physically sluggish. Plus anxiety. It would be hysterical if it werent so catastrophically unfunny.
  15. JemPD

    "No More Mr NICE Guy…" by Prof. Brian Hughes

    Indeed & the worst of it is that they kid themselves that they are the ones being supremely ethical & with our best interests at heart. They think they are my mother, whom when i was a toddler would rename vegetables that i said i didnt like (that she knew i did as i had eaten & enjoyed them...
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