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  1. Keela Too
    Post

    Ideas For Marketing ME More Effectively...

    Just saw this. [MEDIA]
    Post by: Keela Too, May 14, 2018 in forum: General Advocacy Discussions
  2. Keela Too
    Post

    Ideas For Marketing ME More Effectively...

    I think as a charity tag line "living death" is not suitable, but if media used it instead of say "yuppie flu" that would help. eg: ME, a disease...
    Post by: Keela Too, May 14, 2018 in forum: General Advocacy Discussions
  3. Keela Too
    Post

    Ideas For Marketing ME More Effectively...

    And this is where a lot of articles become unstuck. Although the person interviewed might give all the right info, we have to trust that the...
    Post by: Keela Too, May 14, 2018 in forum: General Advocacy Discussions
  4. Keela Too
    Post

    Ideas For Marketing ME More Effectively...

    Or shorter still: "Living Death Disease". I gave a blog post that scary title once, and it got a huge number of hits. So I agree that it has...
    Post by: Keela Too, May 14, 2018 in forum: General Advocacy Discussions
  5. Keela Too
    Post

    Trust in the Context of ME. My #MayAwareness blog post

    I tweeted a snippet to Jeremy Hunt - for all the good it will do. [MEDIA]
    Post by: Keela Too, May 13, 2018 in forum: General Advocacy Discussions
  6. Keela Too
    Post

    Trust in the Context of ME. My #MayAwareness blog post

    Thank you. The audio seems to have had quite a few listens, so I'm hoping it was useful to some. It's an interesting testament to my improved...
    Post by: Keela Too, May 12, 2018 in forum: General Advocacy Discussions
  7. Keela Too
    Post

    youtuber: Have you been misled...? // What is PACE? // Medical Scandal

    Thanks for this link. I saw the video a few days ago but only watched half of it. Liked her style, and wanted to watch the rest. :)
    Post by: Keela Too, May 11, 2018 in forum: General ME/CFS news
  8. Keela Too
    Post

    Trust in the Context of ME. My #MayAwareness blog post

    Thank you @Sly Saint @arewenearlythereyet and @Invisible Woman for your kind comments. Once I started writing about trust I found there was so...
    Post by: Keela Too, May 11, 2018 in forum: General Advocacy Discussions
  9. Keela Too
    Thread

    Trust in the Context of ME. My #MayAwareness blog post

    Hope this is okay to share. I've included an audio version of the post too. "Trust issues run through every level of the ME experience....
    Thread by: Keela Too, May 11, 2018, 12 replies, in forum: General Advocacy Discussions
  10. Keela Too
    Post

    Janet Dafoe - The Whitney Plea

    Ah... this I didn't see.... but agree it could be interpreted that way. Hmmmm....
    Post by: Keela Too, May 11, 2018 in forum: General ME/CFS news
  11. Keela Too
    Post

    Janet Dafoe - The Whitney Plea

    This could be really powerful.
    Post by: Keela Too, May 10, 2018 in forum: General ME/CFS news
  12. Keela Too
    Post

    Wessley

    Noticed this. I haven’t read any if it yet. [MEDIA]
    Post by: Keela Too, May 3, 2018 in forum: Psychosomatic news - ME/CFS and Long Covid
  13. Keela Too
    Post

    Workwell Foundation letter to healthcare providers: Opposition to GET for ME/CFS

    I tweeted my concern about the phrase “before increasing”. It is “increase” that is such a problem with GET. Todd Davenport has replied that...
    Post by: Keela Too, May 2, 2018 in forum: ME/CFS research news
  14. Keela Too
    Post

    Anyone know the studies claiming to show if ME patients believe won’t get better they will not?

    The premise seems to be missing a bit . . . When patients believe their condition has a physical cause, and when they fear exercise, they are...
    Post by: Keela Too, Apr 30, 2018 in forum: Psychosomatic news - ME/CFS and Long Covid
  15. Keela Too
    Post

    Michael Sharpe skewered by @JohntheJack on Twitter

    I read that the other way - ie that he was accusing other therapists of applying his therapies in a harmful manner? But indeed I see now it...
    Post by: Keela Too, Apr 25, 2018 in forum: General ME/CFS news
  16. Keela Too
    Post

    David Tuller - Trial By Error: The Shopping Bag Study; and New York State’s Revamped Website

    I think the numbers are nested. ie they have included the clinically anxious within the group that is subclinically anxious - "within the...
    Post by: Keela Too, Apr 25, 2018 in forum: General ME/CFS news
  17. Keela Too
    Post

    David Tuller - Trial By Error: The Shopping Bag Study; and New York State’s Revamped Website

    I just feel so sorry for which ever young researcher has been persuaded that this might be a good idea. :(
    Post by: Keela Too, Apr 24, 2018 in forum: General ME/CFS news
  18. Keela Too
    Post

    David Tuller: Trial By Error: My Berkeley-Backed Crowdfunding Campaign

    Fully funded! Yay!
    Post by: Keela Too, Apr 24, 2018 in forum: General ME/CFS news
  19. Keela Too
    Post

    (Not a recommendation) Bath University, Volunteer for research investigating Chronic Fatigue Syndrome

    Probably so they can say that high heart rate indicates undue worry and concern about the task. It won't be used to indicate that getting there...
    Post by: Keela Too, Apr 24, 2018 in forum: Psychosomatic research - ME/CFS and Long Covid
  20. Keela Too
    Post

    (Not a recommendation) Bath University, Volunteer for research investigating Chronic Fatigue Syndrome

    What about comparing to a cohort that are first day out of bed after a full blown 'flu. Might those patients also have feelings about being asked...
    Post by: Keela Too, Apr 24, 2018 in forum: Psychosomatic research - ME/CFS and Long Covid
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