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UK - petition to hold a debate in parliament for CFS/ME treatment.

Discussion in 'Action Alerts and Advocacy' started by RogerBlack, Apr 2, 2017.

  1. RogerBlack

    RogerBlack Senior Member

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    https://petition.parliament.uk/petitions/190618
     
    MeSci and Invisible Woman like this.
  2. Tilney

    Tilney

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    2 signatures just added.
    How do you sign if you don't have an email address ?
     
  3. RogerBlack

    RogerBlack Senior Member

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    I'm unsure if you can.
     
  4. keenly

    keenly Senior Member

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    Idiots debating something they know nothing about. MPs are morons.
     
  5. Binkie4

    Binkie4 Senior Member

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    I tried to sign this very recently but was told I couldn't because I had already signed it. I don't remember signing this one specifically but there have been so many.

    I very much wish there would be a debate in Parliament. So that is 100,000 signatures.

    Am concerned that there are so many petitions going round that we may be defeating ourselves .

    Not sure what is the way forward.
     
    Invisible Woman likes this.
  6. Barry53

    Barry53 Senior Member

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    Signed it anyway.
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
  8. boolybooly

    boolybooly

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    UK
  9. Esther12

    Esther12 Senior Member

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    I think that this is badly phrased and could be used against us. I don't really know what it means. Wouldn't suprise me if any 'debate' became a chance for people to waffle about the importance of not stigmatising psychiatric conditions, and it would be difficult to blame them for that.
     
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  10. shannah

    shannah Senior Member

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    I received the email below in my inbox this morning. The petition has now collected 7403 signatures and needs 2597 additional signatures before May 3rd.

    Please do what you can to share it and bring to the attention of others to sign. UK signatures only please. Thank you.

    "With the snap general election this ME petition is going to be closed on May 3rd much earlier than expected. The petition needs at least 10,000 signatures to get any kind of response from Parliament. The last ME parliament petition just fell short of the 10,000 signatures and it would be such a shame if this petition just falls short again. It stands at 7369 signatures today. It would be great if people could sign and very appreciated. Thank you."

    https://petition.parliament.uk/petitions/190618
     
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  11. Tilney

    Tilney

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    I asked the HOC how my Mother could sign the petition as she does not have an email address- this is part of the reply I received today

    upload_2017-4-21_16-20-33.png
     
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  12. shannah

    shannah Senior Member

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    That's useful to know @Tilney.

    Thanks for sharing the reply with us.
     
  13. Matthew Jones

    Matthew Jones Senior Member

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    A debate among non-experts (MPs) might not be particularly useful. I doubt it would do harm either, so I've signed.

    While I'm sure they would be trying to help, there's A LOT of background reading to do to get up to speed on this issue and I doubt they would have the time to read both sides of the "debate" (psychological vs physical) and reach the right conclusion - that the weight of evidence overwhelmingly argues that it is physical.

    Because the public, doctors and MPs look to the scientific experts for information about illness, and when those experts disagree, the only conclusion to be drawn is that there is a debate going on about the cause. Unless they look at the evidence themselves they don't know which expert to trust and they don't have time to actually look at the evidence (the individual studies, the IOM report, etc) and make up their own minds.

    If they do go ahead and have a debate I'd suggest someone prepares an 'info package' for them to read beforehand with all the strongest evidence we have available, as well as a debunking of the PACE trial by as authoritative sources as possible.
     
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  14. slysaint

    slysaint Senior Member

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    10,000 signatures will only get a response, not a debate.
    Most likely they will say something along the lines that these matters are dealt with by NICE.....end of reply.

    Still worth signing, but remember MP Kelvin Hopkins questions all received similar brush-offs, although it was good that they at least were acknowledged/recorded.
     
    SamanthaJ, MEMum and Keela Too like this.

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