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  1. Keela Too

    DWP seeking CCTV footage against disabled

    I don’t know how to begin to find out
  2. Keela Too

    DWP seeking CCTV footage against disabled

    Apparently there is some doubt now about the origins of this story. I haven’t checked further. I shared in shock.
  3. Keela Too

    DWP seeking CCTV footage against disabled

    Saw this on Twitter. Rather shocked. Parking it here. DWP it seems has many ways to get at the disabled. :(
  4. Keela Too

    Dr Myhill’s complaint to GMC about PACE authors.

    Could you check it now. Seems I copied the link in wrongly... Hoping it works now Edit: Thank you both for the alert @Invisible Woman @MeSci
  5. Keela Too

    Dr Myhill’s complaint to GMC about PACE authors.

    I have taken the decision to share what I wrote in my letter to the GMC on my blog. I hope by doing so others might be encouraged to also write in with their own experiences: http://sallyjustme.blogspot.co.uk/2018/03/supporting-dr-myhills-pace-trial.html
  6. Keela Too

    Gary Burgess talking ME/CFS BBC Radio 5 live Wed 1pm

    I think it's impossible to say things in a manner that keeps every one happy. It seems every patient has their own individual peeves - for me, I hate the words "tired" and "fatigue". :P And speaking on radio cannot be easy when the responses have to be formulated and delivered in the heat of...
  7. Keela Too

    NICE list of stakeholders for the ME/CFS Guidelines

    Yes. Probably to do with our devolved government.
  8. Keela Too

    NICE list of stakeholders for the ME/CFS Guidelines

    I thought that was just the deadline for the Jan meeting. As I understand it stakeholder groups can apply at any time. Would just need to be before deadline for application for next stakeholder meeting.
  9. Keela Too

    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    I wonder about the Yellow Card system. Why does it not apply to psychosocial therapies? http://sallyjustme.blogspot.co.uk/2018/02/yellow-cards-psycho-social-therapies.html
  10. Keela Too

    Dr Myhill’s complaint to GMC about PACE authors.

    Petition https://www.change.org/p/the-general-medical-council-i-am-showing-my-support-for-dr-myhill-s-complaint-to-the-gmc-about-the-pace-authors
  11. Keela Too

    Dr Myhill’s complaint to GMC about PACE authors.

    I did mine this morning. Going to re-read it later today before sending it. Agree it would be good to have a flood more of them.
  12. Keela Too

    How to follow up on the Carol Monaghan debate in Westminster

    Slight sideline from PACE but relevant: I wonder if it might be worth asking about the Yellow card system, and why it can only be used for drugs and medical interventions. It doesn't seem to apply to psychological therapies. I need to find the link again. But this seems very pertinent, if...
  13. Keela Too

    Tues 20 Feb | UK parliamentary debate: PACE trial and its effect on people with ME - Carol Monaghan, MP

    I tried to tweet some stuff from the debate. All told though I thought Carol Monaghan was totally amazing! She didn't "miss and hit the wall" as the saying goes. Right to the point from the very beginning. Thanks also to my MP Jim Shannon for attending and asking a question early on about...
  14. Keela Too

    Public The big fat lie: Britons eat 50% more than they say

    The added benefit of the Gala Pork Pie is that you can also end up with egg on your face. :laugh:
  15. Keela Too

    NICE announces next steps in updating its guideline on ME/CFS

    I "think" I read somewhere that the Lay members are a people who have applied to be on the Lay team (or something like that). They are not specific to anyone guideline or purpose, but can be asked to act as Lay participants when and where required. So maybe the post on this panel was...
  16. Keela Too

    NICE announces next steps in updating its guideline on ME/CFS

    I have just finished filling in the Online system for my expenses.... I guess it might be easier second time around (if that happens), but it's a bit of a faff to say the least.
  17. Keela Too

    Trial By Error: QMUL and FOI; Nature and Cochrane; the Pineapple Fund

    It is also unreasonable I think. It creates a huge amount of work for those looking at FOI requests - ie assessing multiple organisations for their capabilities, instead of just looking at the organisation to which the FOI applies. Could this be challenged on principle??
  18. Keela Too

    Trial By Error: QMUL and FOI; Nature and Cochrane; the Pineapple Fund

    So from this quote it would seem that a "lowest common denominator" effect has to be taken regarding the capability of staff. Surely, "if you have the staff capable of doing the task, use them", would be a much less convoluted means of achieving fairness. Why does - what all public...
  19. Keela Too

    PACE Trial application to MRC for funding in 2002

    I was thinking about these Birthday and Christmas cards. What message was sent along with them? Did they include thanks to the participants for being part of such a great great trial? Did they tell participants how the therapies were proving such a success? I wonder. Does anyone know?
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