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Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Jul 10, 2017.

  1. Countrygirl

    Countrygirl ME is not MUS

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  2. Aurator

    Aurator Senior Member

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    Is there some critical number which once reached will oblige NICE to change their minds? I wish there were, but doubt it, unless I've missed a crucial point somewhere about a critical number of signatures on a patient organisation's petition suddenly being able to override NICE's considerable decision-making autonomy.
     
    Luther Blissett, SamanthaJ and MEMum like this.
  3. SamanthaJ

    SamanthaJ Senior Member

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    I think it's more that it would be unprecedented for so many patients to raise an objection to a guideline. NICE can just ignore it, but then they can no longer claim to be listening to patients. It also allows the MEA and other pro-patient groups to point to evidence of patient support.
     
  4. Aurator

    Aurator Senior Member

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    That's a good answer, but I suspect NICE would have a simple explanation for the lack of precedence: namely that ME/CFS is an illness that makes its sufferers uniquely militant in the face of treatment guidelines that don't meet with their approval. Given this, masses of signatures would be seen not so much as an indication of the need for change as a symptom of the condition the signatories are suffering from.

    I can see that this viewpoint is not like-bait, but it needs expressing.
     
  5. Sean

    Sean Senior Member

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    It is a line that is getting harder to sell, as more and more of the real story comes out.

    The UK medical establishment cannot hold out against reality forever.
     
    Solstice, Binkie4, Valentijn and 8 others like this.
  6. arewenearlythereyet

    arewenearlythereyet Senior Member

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    7893 we are nearly at 8000 :thumbsup:
     
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  7. Barry53

    Barry53 Senior Member

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    10,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000,000 probably.
     
  8. Aurator

    Aurator Senior Member

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    That's finite at least, Barry, so might be doable. I take it signatures written by bacteria count.
     
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  9. Barry53

    Barry53 Senior Member

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    Nope! Finite it may be, but so far as NICE is concerned any number will probably be deemed infinite.
     
    Luther Blissett likes this.
  10. charles shepherd

    charles shepherd Senior Member

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    There isn't an accurate answer to your very valid question

    However, as with the UK government petitions, I don't think any organisation like NICE can simply dismiss a petition that gains 10,000 or more signatures

    And it looks as though we should go through this 10K barrier well before the deadline for submissions closes

    Having 10,000+ signatures will also provide our parliamentary colleagues with something to work with….

    CS
     
  11. Barry53

    Barry53 Senior Member

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    :thumbsup:
     
  12. charles shepherd

    charles shepherd Senior Member

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    Looks as though we should break through the 8,000 barrier by the end of tonight…

    CS
     
  13. Countrygirl

    Countrygirl ME is not MUS

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    :balloons::balloons::balloons::balloons: :balloons::balloons::balloons:8000!!!!! :balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons:
     
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  14. arewenearlythereyet

    arewenearlythereyet Senior Member

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    This is better than the general election
     
  15. charles shepherd

    charles shepherd Senior Member

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    Perhaps someone could start a petition in support of NOT reviewing the NICE guideline - seriously!

    There may just be someone out there who would like to support the current NICE guideline

    And we could not then be accused of failing to provide another option in support of NICE

    CS
     
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  16. SamanthaJ

    SamanthaJ Senior Member

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    That occurred to me, but I was worried there might be 10,000 CBT practitioners who'd sign it! Would be interesting to see, though.

    Edit: Frankly, that stakeholder list made it look like there might be 10,000 therapists out there...
     
    Last edited: Jul 12, 2017
  17. Mary

    Mary Senior Member

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    Better than our U.S. election for sure! :nervous:

    I just signed ---
     
  18. Mary

    Mary Senior Member

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    @Countrygirl - I almost didn't even look at this thread because I had assumed I could not sign, being a furriner and all :D

    It might be good if you could indicate in the title that non-UK residents can sign -
     
  19. Countrygirl

    Countrygirl ME is not MUS

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    Thanks @Mary for that advice!

    I have changed the title so that people realise it is an international petition.
     
  20. Countrygirl

    Countrygirl ME is not MUS

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    I think this soon will be a realistic fear!

    https://www.reed.co.uk/career-advice/how-to-become-a-cbt-therapist/

    The above is a link to CBT training. It's a good deal. Pay £12 :cool: (and a further few quid for the certificate) and you can train online as a CBT therapist and apply for a job with the IAPT service :woot::woot::woot:as is advertised in the training documents.

    From stacking shelves in Tesco to curing people with ME in six weeks for a starting salary of £24 000 rising to £40 000.:jaw-drop: Not a bad deal.!!................as long as you're not the poor patient, of course.:ill::aghhh:
     

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