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  1. Keela Too
    Post

    Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

    Yellow card: https://yellowcard.mhra.gov.uk/the-yellow-card-scheme/ I "think" this implies that therapies are not part of the yellow card scheme....
    Post by: Keela Too, Jan 18, 2018 in forum: Advocacy Projects and Campaigns
  2. Keela Too
    Post

    Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

    Agree @Barry Also I think it is a concern that there is a yellow card system for pharmaceuticals, but not for psychological/psychiatric therapies....
    Post by: Keela Too, Jan 18, 2018 in forum: Advocacy Projects and Campaigns
  3. Keela Too
    Thread

    Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

    I've put both a report of my impressions of the meeting, and my list of points to raise, into this blog post....
    Thread by: Keela Too, Jan 16, 2018, 149 replies, in forum: Advocacy Projects and Campaigns
  4. Keela Too
    Post

    Format of NICE stakeholder meeting?

    I've put both a report of my impressions of the meeting, and my list of points to raise, into this blog post....
    Post by: Keela Too, Jan 16, 2018 in forum: Advocacy Projects and Campaigns
  5. Keela Too
    Post

    Format of NICE stakeholder meeting?

    I also felt cautious optimism .
    Post by: Keela Too, Jan 16, 2018 in forum: Advocacy Projects and Campaigns
  6. Keela Too
    Post

    Dr Myhill’s complaint to GMC about PACE authors.

    I think timing is right and if Dr Myhill is gutsy enough to do it then it looks like she is the right person to ask these questions.
    Post by: Keela Too, Jan 16, 2018 in forum: General ME/CFS news
  7. Keela Too
    Post

    Format of NICE stakeholder meeting?

    About to travel. Computer packed. I’ll back online tonight.. I hope
    Post by: Keela Too, Jan 15, 2018 in forum: Advocacy Projects and Campaigns
  8. Keela Too
    Post

    Format of NICE stakeholder meeting?

    In case I am unable to say all that I wish to say at the meeting, I have prepared a 2 sided A4 sheet of points. I will use this during the...
    Post by: Keela Too, Jan 15, 2018 in forum: Advocacy Projects and Campaigns
  9. Keela Too
    Post

    Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study

    I'm not sure it is possible to say that BPS is all about insurance payments - although I do agree there seems to be some evidence pointing in that...
    Post by: Keela Too, Jan 13, 2018 in forum: Psychosomatic research - ME/CFS and Long Covid
  10. Keela Too
    Post

    Are objective outcomes of cognitive function possible?

    I can remember not being able to process walking past some one coming the other direction. Academically I knew the 12 foot wide path was plenty of...
    Post by: Keela Too, Jan 12, 2018 in forum: Other research methodology topics
  11. Keela Too
    Post

    Format of NICE stakeholder meeting?

    Yes. @Sbag I have used the WHO / neurological disease point myself, It’s just that everything around this disease feels so slippery. What ever...
    Post by: Keela Too, Jan 12, 2018 in forum: Advocacy Projects and Campaigns
  12. Keela Too
    Post

    Format of NICE stakeholder meeting?

    @Sbag I wonder if a neurological label is really useful. It’s not psyche, but is it really the right place? Agree it would be interesting to...
    Post by: Keela Too, Jan 12, 2018 in forum: Advocacy Projects and Campaigns
  13. Keela Too
    Post

    Format of NICE stakeholder meeting?

    I think there is material from (Welcome Trust) - edit no not them. Who do I mean? VanNess and co. Would need to search.... Edit again Workwell...
    Post by: Keela Too, Jan 12, 2018 in forum: Advocacy Projects and Campaigns
  14. Keela Too
    Post

    Format of NICE stakeholder meeting?

    IMO counselling is fine. CBT to alter perceptions is just plain manipulative.
    Post by: Keela Too, Jan 11, 2018 in forum: Advocacy Projects and Campaigns
  15. Keela Too
    Post

    Format of NICE stakeholder meeting?

    Do we know how a patient rep gets chosen for the guideline development group?
    Post by: Keela Too, Jan 10, 2018 in forum: Advocacy Projects and Campaigns
  16. Keela Too
    Post

    Format of NICE stakeholder meeting?

    Agree.
    Post by: Keela Too, Jan 10, 2018 in forum: Advocacy Projects and Campaigns
  17. Keela Too
    Post

    Format of NICE stakeholder meeting?

    @Jonathan Edwards - I think there also needs to be some mention of the most severe. At the moment the guidelines don’t seem to give the very...
    Post by: Keela Too, Jan 10, 2018 in forum: Advocacy Projects and Campaigns
  18. Keela Too
    Post

    Format of NICE stakeholder meeting?

    Sorry that is the way it is for you now.... but I do understand. A couple of years ago I could not have contemplated this. As it is my husband is...
    Post by: Keela Too, Jan 10, 2018 in forum: Advocacy Projects and Campaigns
  19. Keela Too
    Post

    Format of NICE stakeholder meeting?

    Are you not going @Andy?
    Post by: Keela Too, Jan 10, 2018 in forum: Advocacy Projects and Campaigns
  20. Keela Too
    Post

    Format of NICE stakeholder meeting?

    I have now heard back and this is to be the format for the day: “The format of the meeting will follow some short presentations from NICE staff...
    Post by: Keela Too, Jan 8, 2018 in forum: Advocacy Projects and Campaigns
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