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

Discussion in 'Petitions' started by Sly Saint, Feb 23, 2018.

  1. TiredSam

    TiredSam Moderator Staff Member

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    The photo is of a doctor doing a facepalm, which sends entirely the wrong message. What's she thinking - "Oh no, not another ME patient!"
     
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    does anyone know how to contact Robin?



    3020
     
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    Robin is active on ME Action - facebook page?
     
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  4. Barry

    Barry Senior Member (Voting Rights)

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    Never saw it that way until you said, and still don't now. To me it shows a doctor holding her head in her hand, as people do when shattered; her posture is just the same as when you have your elbow on the desk for support.
     
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  5. TiredSam

    TiredSam Moderator Staff Member

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    Well I was being a bit silly. But just the fact that it's another pretty woman looking tired at her desk is annoying enough.
     
  6. Barry

    Barry Senior Member (Voting Rights)

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    True, but if that is actually a picture of the real doctor, then you can't blame her for the way she looks ... I'd assumed it was as I've seen that picture on her own website somewhere, but cannot now find where. But I may have just got my wires crossed for a change.

    Edit: This is who I was thinking of, Dr. K.N. Hng. . Still don't know if that picture is of her or not though.

    Edit 2: I see @MEMarge beat me to it :).
     
    Last edited: Mar 5, 2018
    NelliePledge and MEMarge like this.
  7. Sbag

    Sbag Senior Member (Voting Rights)

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    It might be worth writing to the male MP from the debate in Parliament the other week. As he had expressed concern about GET and suggested removing it until the new guideline is published. Telling him that there is no way of flagging non pharmacological treatments that cause harm might help add weight to his demand to remove. Also it might give him and the other MPs another issue to bring up when the next debate comes round.
    I think I saw that he had written a question to parliament on whether NICE had details of how many people were harmed. So he obviously still cares about this part of the problem and he may be able to ask another question as to why there is no yellow card system for these treatments.
     
  8. MEMarge

    MEMarge Senior Member (Voting Rights)

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    This doctor has a fairly active Facebook Group, could message her, via this:
    Dr Hng's ME/CFS Friends

    The book is OK. It is an easy read and does include relevant info/descriptions.
    It did annoy my daughter, due to refs to being ultra busy, burnout style, but keeping going as long as she could.....
     
  9. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Re the Yellow card thing
    Keep an eye out this or next week. My own MP, Jim Shannon, has given me the head's up that he will ask this question soon. :)
     
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    I really don’t have an issue with the image it gets over the key message to a broad target audience including doctors that the book is by a doctor.

    I have read the book it is indeed an easy read. I haven’t read anything other than a book of sort stories for months and I was an avid reader.

    We’re coming back to the same point made in discussions about Gary Burgess advocacy no individual approach is going to be 100% approved by everybody. I’m not saying the thoughts about the picture aren’t valid the books have this picture now so it is already out there.

    If you want to feed in thoughts to this Dr -who has only had ME 18 months but is spending energy to contribute to the avocacy effort including amongst her peers - get involved in her Facebook group she’s looking for people to work with on advocacy.

    Dr Hngs Facebook friends
     
    Last edited: Mar 6, 2018
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  11. Keela Too

    Keela Too Senior Member (Voting Rights)

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  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Nigel Speight commented:
    "
    Nigel Speight
    1 week ago ago

    As a paediatrician I see case after case of young people with ME. CBT proves virtually always ineffectual and GET almost universally harmful, sometimes with long term effects. These treatments should be consigned to the dustbin of history.

    3087
     
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  13. TiredSam

    TiredSam Moderator Staff Member

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  14. Andy

    Andy Committee Member & Outreach

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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    now at 3200
     
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @dave30th please retweet

    3350

    eta:
    it was retweeted by #MEAction

    still can't find it on Jen Breas FB or twitter tho:(

    3373
     
    Last edited: Mar 8, 2018
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  17. NelliePledge

    NelliePledge Moderator Staff Member

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    @Tom Kindlon hi Tom please could you post this on your Facebook and Twitter
     
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    anyone who has tweeted please tweet again.
    share on as many FBs pages as you can.
    currently going up at the rate of about 100 a day.

    3450
     
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  19. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Done
     
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  20. NelliePledge

    NelliePledge Moderator Staff Member

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    Hutan, Tom Kindlon and MEMarge like this.

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