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  1. Suffolkres
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    I am not sure which post was found offensive. I confess to being put on the naughty chair a bit! But not about feeling encouraged by Forward ME...
    Post by: Suffolkres, Oct 23, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  2. Suffolkres
    Post

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    This is just a misguided attempt to rub salt into the wound .... and clutching at straws.... Looks an interesting read? Clutching at straws in...
    Post by: Suffolkres, Oct 22, 2021 in forum: Psychosomatic research - ME/CFS and Long Covid
  3. Suffolkres
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    I emailed and twittered and also got a personal reply- all credit to Caitlin!
    Post by: Suffolkres, Oct 22, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  4. Suffolkres
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    I am actually quite encouraged by this statement! Forward ME FINAL STATEMENT FOLLOWING THE NICE ROUND TABLE ON ME - Oct 22nd 2021...
    Post by: Suffolkres, Oct 22, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  5. Suffolkres
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    https://www.aomrc.org.uk/about-us/governance/ Interesting as their is a "Helen' here....... I am wondering something.... Professor Helen...
    Post by: Suffolkres, Oct 22, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  6. Suffolkres
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    Following my email to CEO NICE, today I received a reply to some of my concerns. ( my bolding re Academy) " Thank you for your follow up emails...
    Post by: Suffolkres, Oct 22, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  7. Suffolkres
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    it's a student Journalist.....
    Post by: Suffolkres, Oct 22, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  8. Suffolkres
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    So, is Pulse using students and internships to save money? About me Hello! I’m a freelance writer and journalist, specialising in news and...
    Post by: Suffolkres, Oct 21, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  9. Suffolkres
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    I, and I suspect several others did some twitter responses which would not have gone down well about misleading chronic fatigue in title.. So I...
    Post by: Suffolkres, Oct 21, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  10. Suffolkres
    Thread

    United Kingdom: Petition, Create a Task Force to Oversee Drug Procurement for ALL Post Viral Conditions - deadline 20 November 2021

    Moved post The great majority of doctors will not get to hear about this. However, quite a high proportion of GPs are likely to take note since it...
    Thread by: Suffolkres, Oct 19, 2021, 0 replies, in forum: Petitions
  11. Suffolkres
    Post

    UK: University College London hospitals (NHS)

    Moved post Russell Viner Professor of Adolescent Health at the UCL Institute of Child Health RCPC...
    Post by: Suffolkres, Oct 16, 2021 in forum: UK clinics and doctors
  12. Suffolkres
    Thread

    UK: University College London hospitals (NHS)

    Moved post Somehow this seems to have made it into the Swiss journal Paediatrica. Google translate of the article:...
    Thread by: Suffolkres, Oct 16, 2021, 116 replies, in forum: UK clinics and doctors
  13. Suffolkres
    Post

    A charter to improve ME/CFS research

    Have in place agreed Key Performance Indicators (KPIs) and Measure against these during annual required Quality Control Audits of Service...
    Post by: Suffolkres, Oct 11, 2021 in forum: ME/CFS research news
  14. Suffolkres
    Post

    United Kingdom: ME Association governance issues

    Case of leopard ( or canny wolf) changing his spots?
    Post by: Suffolkres, Oct 8, 2021 in forum: Organisations relevant to ME/CFS and Long Covid
  15. Suffolkres
    Post

    United Kingdom: Optimum Health Clinic (Alex Howard)

    I got sent a pro copy of his book years ago and was very cautious about him...
    Post by: Suffolkres, Sep 8, 2021 in forum: UK clinics and doctors
  16. Suffolkres
    Post

    United Kingdom: News from Forward-ME Group

    Thanks so much for elaborating on this. I too have reservations about FME steer. It was very much a personal set up, much appreciated but with a...
    Post by: Suffolkres, Aug 31, 2021 in forum: News from organisations
  17. Suffolkres
    Post

    Guardian Article on NICE pause

    I wish the Gruniad would get it's facts right.... I don't think Forward is a Charity Group is it? "The ME community in the UK is served by a...
    Post by: Suffolkres, Aug 30, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  18. Suffolkres
    Post

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

    You can email them though! Standards And Corrections STANDARDS We endeavour to be accurate in our reporting, transparent and thorough in our...
    Post by: Suffolkres, Aug 25, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  19. Suffolkres
    Post

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

    Moved posts https://www.huffingtonpost.co.uk/entry/doctors-disagree-over-me-treatment_uk_611cccd7e4b0c696810328fd @FaimaBakar Faima, I see...
    Post by: Suffolkres, Aug 25, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  20. Suffolkres
    Post

    Michael Sharpe skewered by @JohntheJack on Twitter

    He went onto another Charity Role I think the Stroke Association...
    Post by: Suffolkres, Aug 24, 2021 in forum: General ME/CFS news
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