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  1. JemPD
    Post

    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...
    Post by: JemPD, Nov 26, 2020 in forum: Long Covid news
  2. JemPD
    Post

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

    This
    Post by: JemPD, Nov 23, 2020 in forum: General ME/CFS news
  3. JemPD
    Post

    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...
    Post by: JemPD, Nov 22, 2020 in forum: Psychosomatic news - ME/CFS and Long Covid
  4. JemPD
    Post

    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...
    Post by: JemPD, Nov 22, 2020 in forum: General ME/CFS news
  5. JemPD
    Post

    "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...
    Post by: JemPD, Nov 21, 2020 in forum: General ME/CFS news
  6. JemPD
    Post

    Testing the ‘seizure scaffold’: What can experimental simulation tell us about functional seizures?, 2020, Tiefenbach, Stone et al

    Sci hub link not working - goes to a different study?
    Post by: JemPD, Nov 21, 2020 in forum: Other psychosomatic news and research
  7. JemPD
    Post

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

    Hi @Natalie yes i have seen that and thought how wonderful it was, gorgeous drawing.
    Post by: JemPD, Nov 20, 2020 in forum: Advocacy Projects and Campaigns
  8. JemPD
    Post

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

    Cant wait to watch it. @Natalie these videos are amazing. Just to let you know that the severe ME one helped me recently in a discussion with my...
    Post by: JemPD, Nov 20, 2020 in forum: Advocacy Projects and Campaigns
  9. JemPD
    Post

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

    What a *$!!*@$! I'm pretty sure we could - lol maybe should - put together a list of idiotic, patronising and downright insulting/abusive things...
    Post by: JemPD, Nov 17, 2020 in forum: Psychosomatic research - ME/CFS and Long Covid
  10. JemPD
    Post

    Sleep meds poll

    i take occasional diphenhydramine & doxylamine succinate (both anti histamines) I find the latter almost miraculous & even the former will make me...
    Post by: JemPD, Nov 16, 2020 in forum: Drug and supplement treatments
  11. JemPD
    Post

    International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

    a great & hard won achievement well done & huge thanks
    Post by: JemPD, Nov 14, 2020 in forum: News from organisations
  12. JemPD
    Post

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

    Exactly. They have spent the best part of 40yrs erroneously shaming PwME for supposedly wanting to 'adopt the sick role' for some kind of...
    Post by: JemPD, Nov 14, 2020 in forum: Psychosomatic research - ME/CFS and Long Covid
  13. JemPD
    Post

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

    All that quote says is that she wants to leave behind is the label of ME & the crap that goes with it. If they had asked the patient 'if you had...
    Post by: JemPD, Nov 13, 2020 in forum: Psychosomatic research - ME/CFS and Long Covid
  14. JemPD
    Post

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

    very disappointing that even Maureen Hanson doesnt know that palpitations, tinnitus, chest pain, persistent cough, are not uncommon in ME...
    Post by: JemPD, Nov 13, 2020 in forum: Long Covid news
  15. JemPD
    Post

    Finland: Duodecim ME/CFS Guideline: Draft Published for Consultation

    Thinking of you all hoping the bits that unhelpful can be improved, gosh there's a lot going on at the moment!
    Post by: JemPD, Nov 12, 2020 in forum: Other guidelines
  16. JemPD
    Post

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

    I agree. I'd be flat out astonished if they werent.
    Post by: JemPD, Nov 12, 2020 in forum: General ME/CFS news
  17. JemPD
    Post

    NICE ME/CFS draft guideline - publication dates and delays 2020

    Ok thanks @Trish huge thanks to all the committee & to everyone working on it, i am soooo glad to be part of a group that producing what i know...
    Post by: JemPD, Nov 11, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  18. JemPD
    Post

    NICE ME/CFS draft guideline - publication dates and delays 2020

    Is there a time line for this more detailed than 'as soon as possible'? I know there is a deadline for submitting responses to NICE, but i have a...
    Post by: JemPD, Nov 11, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  19. JemPD
    Post

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

    My concerns in a nutshell. I do hope people are not being too triumphalistic on social media... it aint published yet.
    Post by: JemPD, Nov 11, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  20. JemPD
    Post

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

    Ahhh, i read that article 3 times never noticed her even being included never mind saying that sorry @Esther12 :oops: I am clearly too muzzy...
    Post by: JemPD, Nov 10, 2020 in forum: 2020 UK NICE ME/CFS Guideline
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