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  1. Keela Too

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

    I tweeted a snippet to Jeremy Hunt - for all the good it will do.
  2. Keela Too

    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 stamina these days that I was able to read the whole 8.5 minutes in one single take. Back in September 2015, when I did the audio for the ePatient...
  3. Keela Too

    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. :)
  4. Keela Too

    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 MUCH I could write about. I admit I considered tackling the issue of the charities and other organisations in which we are expected to place our...
  5. Keela Too

    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. Being unable to trust our physical bodies to perform, is just the beginning. Trust, in the context of ME, goes way beyond personal, physical problems...
  6. Keela Too

    Janet Dafoe - The Whitney Plea

    Ah... this I didn't see.... but agree it could be interpreted that way. Hmmmm....
  7. Keela Too

    Janet Dafoe - The Whitney Plea

    This could be really powerful.
  8. Keela Too

    Wessley

    Noticed this. I haven’t read any if it yet.
  9. Keela Too

    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 he will bring this concern to the group.
  10. Keela Too

    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 much more likely to have an organic disease, and so they are much less likely to recover.
  11. Keela Too

    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 could also be taken to mean the patients deliberately harming themselves - weird idea, I mean why would we?? Edit... Replied before @Joel 's post.. You...
  12. Keela Too

    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 subclinical range of health anxiety", so everyone who is that level or more is in the bigger group. I agree of course that their language here is not...
  13. Keela Too

    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. :(
  14. Keela Too

    (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 and doing the activity are more difficult for ME folk, OH NO, it will be used to say we get stressed by being asked to exert ourselves, and THAT is our...
  15. Keela Too

    (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 to carry shopping bags for the amusement of some researchers. Might they too use @Trish 's trial acronym??
  16. Keela Too

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

    I think it works the other way around. We are ahead of them. It is about 6.40pm here now and about 10.40am there, so we will hit midnight before PDT. So I think it will be wee small hours of 1st May for us when the pay window shuts? Edited a few times to work it all out... They are 8 hours...
  17. Keela Too

    Article: The Corruption of Evidence Based Medicine — Killing for Profit

    Good presentation @Amw66 . I'm about 1/3 way through. So many of the things he says here apply to ME as well. I retweeted Dr Malhotra's tweet with a comment. And he must have been online as he retweeted my tweet. :) As one of those strange coincidences: I was watching a video yesterday...
  18. Keela Too

    What is Action for ME's current (March 2018) position on the PACE trial?

    I appreciate the addition of this statement on the AfME site: https://www.actionforme.org.uk/resources/questions-and-answers/what-are-get-and-cbt/ Thank you Clare, I think this will help protect new patients:
  19. Keela Too

    Article: The Corruption of Evidence Based Medicine — Killing for Profit

    Indeed, I don't deny the need to eat less, and to continue to do so after the "diet" ends. I just suspect that the current paradigm where "low fat" foods are pushed as "healthy" is counter productive & may in fact be stimulating appetite - and so reducing any aspiring dieters' chances of...
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