Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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How anyone (also non-UK) can easily protest the MEGA petition

Discussion in 'Petitions' started by TiredSam, Oct 2, 2016.

  1. TiredSam

    TiredSam The wise nematode hibernates

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    Go to change.org, who are hosting the petition:

    https://www.change.org/p/support-th...ts-application-to-major-uk-research-funders/c

    Click on "log in" in the top right, then click "sign up" and join with an email address.

    You don't need to sign the petition. Some who have already signed have made comments protesting the involvement of BPS / PACE people. All we have to do is click those comments to the top, which you can do as a member of change.org without signing the petition.

    A lot of comments favourable to our cause are already at the top, so just order comments by "top rated" and they'll be easy to find at the top anyway. Then like them to keep them at the top and register your agreement .

    Here are some of the comments you might like to support, there are also a few more now:


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    Last edited: Oct 2, 2016
    snowathlete, Yogi, Mary and 10 others like this.
  2. Sasha

    Sasha Fine, thank you

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    This is an interesting idea but there are some confused/baffling/off-the-point comments on there and if we vote them up, we'll look confused too.
     
    MEMum and trishrhymes like this.
  3. TiredSam

    TiredSam The wise nematode hibernates

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    Nobody has to vote up any comment they aren't happy with. The end result will be that the comments the majority of people think reflect most accurately how they feel will end up at the top. I was just listing some examples for people to choose from, not making recommendations. If anyone can't find a comment that reflects their opinion and feels strongly enough about it they can always sign themselves, and for the cost of one signature that won't change anything in the long run they can write the perfect comment for hundreds to vote up. Or they can contact someone who's already signed to write it for them, as signatories can make more than one comment.
     
  4. Joh

    Joh Inactivist

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    Done:)
     
    Mary, Mel9 and TiredSam like this.
  5. Valentijn

    Valentijn Senior Member

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    Yeah, some are clearly not understanding that this isn't involving treatments. There's no objective outcomes to think about. But most of the rest of their comment is good, and definitely better then "OMG, this will be awesome!" :p
     
  6. Valentijn

    Valentijn Senior Member

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    It would be nice to see a little more focus on Esther Crawley. She's the one who "cures" children by giving them a mental health diagnosis after treatment, if the same symptoms persist.
     
    Jan, Cornishbird, snowathlete and 7 others like this.
  7. BurnA

    BurnA Senior Member

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    Now all we need is for people to withdraw their signature but leave all the comments. :D
     
    Yogi, MEMum, Countrygirl and 2 others like this.
  8. TiredSam

    TiredSam The wise nematode hibernates

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    Seriously - can you do that? Unsign once you've signed, I mean.
     
    MEMum likes this.
  9. paul80

    paul80 Senior Member

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    Good idea.

    just to make it easier for people: it doesn't say "register" on mine, you have to click "login" in the top right and then click "sign up".
     
    TiredSam likes this.
  10. paul80

    paul80 Senior Member

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    yea someone showed how to do it yesterday
     
    TiredSam likes this.
  11. TiredSam

    TiredSam The wise nematode hibernates

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    Thanks, OP ammended. What does "best recommendations" say in English?
     
  12. paul80

    paul80 Senior Member

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    top rated
     
    TiredSam likes this.
  13. TiredSam

    TiredSam The wise nematode hibernates

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    And if you do it, does your comment remain?
     
  14. paul80

    paul80 Senior Member

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    Not sure
     
    TiredSam likes this.
  15. slysaint

    slysaint Senior Member

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    and @TiredSam
    AndyPR posted this yesterday:

    If people have signed this Mega Research Project Petition ...unaware of the PACE exponents' involvement ...if they wish to UNSIGN pending further clarification of patient selection criteria, data sharing protocols, and exactly how the PACE experts are involved in the study.....
    Go to your confirmation e.mail and press the "didn't sign" text box and that will remove your name.

    If you have lost or deleted the original email confirmation, you can also fill in a form on the Change org web page and request to be removed. They will do so and confirm it.
     
    Yogi, Lindberg, BurnA and 3 others like this.
  16. TiredSam

    TiredSam The wise nematode hibernates

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    Top 3 comments now:

    upload_2016-10-2_19-57-36.png

    1977 signatures so far
     

    Attached Files:

    Yogi, BurnA and Valentijn like this.

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