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Petition "After the debate - Call for Change"

Discussion in 'Petitions' started by Inara, Jul 12, 2018.

  1. Inara

    Inara Senior Member (Voting Rights)

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    I didn't find this petition on the forum:

    https://www.change.org/p/carol-monaghan-after-the-debate-call-for-change

    It was shared by ME Action.

    The document has 16 pages.

    Edited to correct: This is not by MEAction but Solve ME/CFS Initiative. Sorry!
     
    Last edited: Jul 12, 2018
    Inara, Jul 12, 2018
    #1
    JaimeS, MSEsperanza, Peter Trewhitt and 2 others like this.
  2. MeSci

    MeSci Senior Member (Voting Rights)

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    Signed - but didn't realise I was signing - I wanted to change the usual incorrectness of the town given!
     
    MeSci, Jul 12, 2018
    #2
    Inara likes this.
  3. Trish

    Trish Moderator Staff Member

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    I haven't decided whether to sign this petition. I have a problem with petitions that make a long list of demands, and word things in a rather exaggerated way.

    To take just one example from this one, under the heading 'full public enquiry...' is included this: ''The misrepresentation of science through control of the media.'' Now if they had said, ''undue influence over some parts of the media'' I might have agreed, though what the government or a public enquiry is expected to do about that, I have no idea.

    I wish petitioners would make one or two simple demands.

    I'd be happier at this stage with simply asking for
    - more money for biomedical research
    - the immediate removal of GET/CBT (and any treatments by any other name that include increases in aerobic activity) from the NICE guidelines and from ME/CFS treatment provided by the NHS.
     
    Trish, Jul 12, 2018
    #3
    JaimeS, petrichor, Andy and 8 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    it has been posted onto MEaction facebook page but I dont think thats the same thing as it being shared by MEAction
     
    NelliePledge, Jul 12, 2018
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    JaimeS, Inara, Skycloud and 1 other person like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    agreed @Trish given there are already a few petitions out that talk about GET/CBT Im not convinced yet another one is an effective advocacy tool. And anything long and rambling is ineffective in getting messages out and actually can be counterproductive due to lack of clarity. I doubt the value of another petition being signed by the same folks all over again.

    ETA also Dr Myhill is calling for a public inqiry through MAIMES - not sure how this fits with that and she already has 30 MPs signed up so are they're going to be confused by constituents writing to them about another campaign
     
    Last edited: Jul 12, 2018
    NelliePledge, Jul 12, 2018
    #5
    MEMarge, arewenearlythereyet, Inara and 3 others like this.
  6. Inara

    Inara Senior Member (Voting Rights)

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    Well, I received an email...I guess other subscribers too? I view that as sharing , but I'm happy to be corrected.

    I didn't know what to do with this petition too and thought I'd share here in order to have a discussion.
     
    Inara, Jul 12, 2018
    #6
  7. NelliePledge

    NelliePledge Moderator Staff Member

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    ah interesting I've not had an email and on the document it doesnt have MEAction name & logo in the list of supporters

    maybe @chicaguapa or @adambeyoncelowe know if MEAction are involved in this
     
    NelliePledge, Jul 12, 2018
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    Inara likes this.
  8. Inara

    Inara Senior Member (Voting Rights)

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    Oh gosh, I have to check that! I fear...my brain... :(
     
    Inara, Jul 12, 2018
    #8
  9. Inara

    Inara Senior Member (Voting Rights)

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    So, again, an error...reading things and then remember something else...

    Indeed, this is not MEAction but Solve ME/CFS Initiative. So sorry.
     
    Inara, Jul 12, 2018
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    JaimeS and MeSci like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    ah ok I did spot their name/logo
     
    NelliePledge, Jul 12, 2018
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    Inara likes this.
  11. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I don't think it is. Robin Brown is, I believe, a UK based ME advocate, author and doctor (although I don't know if she is still practicing). It looks like Solve are just one of the organisations that have, presumably, indicated their support of the document.
     
    Andy, Jul 13, 2018
    #11
    JaimeS, Inara, Trish and 1 other person like this.
  12. Inara

    Inara Senior Member (Voting Rights)

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    That's what I meant. Done it all wrong. :( sorry all.

    I received a mail by Solve where there was a section about this petition, I searched here if there was a thread, I didn't find it and thought to post it and I hoped to get some opinions.
     
    Inara, Jul 13, 2018
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    JaimeS, Sly Saint, Skycloud and 5 others like this.
  13. duncan

    duncan Senior Member (Voting Rights)

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    Pretty sure this is one of our symptoms the CDC missed.
     
    duncan, Jul 13, 2018
    #13
    JaimeS, Inara, Skycloud and 3 others like this.
  14. Inara

    Inara Senior Member (Voting Rights)

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    It's really so embarrassing. :( Sometimes it can't be hidden.

    Edit: grammar.
     
    Last edited: Jul 16, 2018
    Inara, Jul 14, 2018
    #14
    JaimeS and duncan like this.
  15. duncan

    duncan Senior Member (Voting Rights)

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    I don't engage with neighbors or people anymore because I make so many mistakes. It is what it is.
     
    duncan, Jul 14, 2018
    #15
    JaimeS, MeSci, Inara and 1 other person like this.
  16. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    I know this part of ME too well. If there's a place you don't have to feel embarrassed, it's here on the forum though.

    We even have a thread giving comfort about these special ME moments...

    https://www.s4me.info/threads/me-moments.985/

    :hug:
     
    MSEsperanza, Jul 15, 2018
    #16
    JaimeS, Sly Saint, Inara and 5 others like this.
  17. Inara

    Inara Senior Member (Voting Rights)

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    Inara, Jul 16, 2018
    #17
    JaimeS likes this.

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