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EU Petition - opportunity to lobby for funding for ME research

Discussion in 'Petitions' started by FMMM1, Jul 12, 2019.

  1. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    I tried to register at the weekend and failed several times. Perhaps I should contact support staff and see what will happen if I cannot sign the petition prior to Friday :nailbiting:
     
    MEMarge likes this.
  2. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Thanks for the post. We had decided to try to increase the number of signatures. I've forgotten the details but currently the petition is maybe 6th and if we could get to 10,000 signatures then it would be number 1.
    We had started to encourage people to apply then we heard, from those who tried, that you couldn't support the petition (online) at this time.

    UPDATE/EDIT: the latest information is that people in the UK may not be able to register on the Webportal after the 31st January. If the Webportal is working in the next few days then best to try to sign the petition Webportal before 31st. If you cannot register via the webportal after the 31st then you can send signatures via post --- they won't contribute to the total on the Webportal but they will be counted separately.
    - There is no age limit on who can sign the petition.

    Our target is to increase the number of signatures in the next month/2 months. The Horizon Europe research program is due to be finalised in April. We want a policy included to address the lack of funding for biomedical research into ME - "neglected diseases affecting a significant number of people" (approximately 2 million in the EU have ME) --- specific diseases are not generally named in Horizon Europe (apart from cancer etc.).

    Please keep trying to support the petition online and post an update here, if you find the system is working.
     
    Last edited: Jan 29, 2020
    Andy, MEMarge, rvallee and 3 others like this.
  3. MatthiasRiem

    MatthiasRiem Established Member

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    My girlfriend just received an update and the problem with registering an account on the EU petition site is now solved.

    - Creating a new account from scratch should now work without a problem.

    - If, however, you have already tried to register an account and received an email with an activation link that didn't work, there is an easy workaround.
    The link you received was in the following wrong format:
    https://www.europarl.europa.eu/petitions/en/profile/verify?token=SOMETOCKEN&id=SOMEID
    The correct format is:
    https://petiport.secure.europarl.europa.eu/petitions/en/profile/verify?token=SOMETOCKEN&id=SOMEID
    [Note that the token=SOMETOCKEN&id=SOMEID will, of course, be something else in your activation link, namely a string of symbols unique to your account.]

    In short: copy the wrong link in notepad, replace the www bit by petiport.secure and paste+go the new link in a browser. Your account should then be activated.

    Good luck!

    @FMMM1
     
    Last edited: Jan 29, 2020
    Andy, It's M.E. Linda, Trish and 2 others like this.
  4. MatthiasRiem

    MatthiasRiem Established Member

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    Btw, after logging in (even when you initially followed a link to the petition), you will find yourself on the generic start page of the petition site.
    Searching for 'Evelien Van Den Brink' will easily get you back to the petition.
     
  5. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Hi missed @MatthiasRiem message above so this is basically just a repeat! It seems that the technical glitch has been fixed - you can now log on and support the petition!

    Here is a copy of the email from the petitions committee - it may help! @Michiel Tack @Andy


    "Dear Sirs,

    Thank you for your email.

    Unfortunately there has been recently a technical glitch with the notification messages automatically sent by the PETIportal. The issue has been resolved.

    Both of your accounts on PETIportal are in 'active' status and both have successfully supported petition 0204/2019.


    Other citizens who could not validate their newly created account can try the following :


    The syntax of the URL/link(s) which were suggested to click to activate the account was not correctly formed :


    Basically the wrongly formed emails were in this format:

    https://www.europarl.europa.eu/petitions/en/profile/verify?token=SOMETOCKEN&id=SOMEID

    The host name is incorrect. It needs to be:

    https://petiport.secure.europarl.europa.eu/petitions/en/profile/verify?token=SOMETOCKEN&id=SOMEID


    In short: copy the wrong link in notepad, replace the www bit by petiport.secure and paste+go the new link in a browser, etc.
    ( ps: the token=SOMETOCKEN&id=SOMEID will, of course be something else, UNIQUE for your account)



    This is only for the messages that have been sent by petiportal in the last couple of days. Currently the issue has been resolved, meaning that the link in the notifications messages are correctly formed.

    If someone would not be able to validate her/his newly created account to support on PETIportal, please send us some screenshot and information. We always do our best to make it work as soon as possible.


    We apologise for the inconvenience and thank you sincerely for your comprehension and support.


    Kind regards,

    The Secretariat of the Committee on Petitions"
     
  6. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Thank you all, had to try several times to log into the European Parliament website but I am very happy to have added my support to Evelien’s Petition before 31 January :thumbup:
     
    Andy, MEMarge, FMMM1 and 2 others like this.
  7. Andy

    Andy Committee Member & Outreach

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    Code:
    https://www.facebook.com/sci4me/posts/1044972945889114


    Code:
    https://twitter.com/s4me_info/status/1223181588831391744?s=20
     
  8. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    My understanding is that people from outside the EU (which includes people from the UK after Brexit) can still sign the paper version of the petition and send in their support through the mail.

    @FMMM1
     
    MEMarge, FMMM1 and ringding like this.
  9. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Yes, I agree i.e. people from the UK can still sign the paper version of the petition and send in their support through the mail. However, I would encourage those in the UK to support the petition today; that way their support will be counted on the Petitions Committee webpage - ME is in the top group of petitions (6th?) and if it could get 10,000 online signatures (in total) then it would be number 1!
     
  10. Andy

    Andy Committee Member & Outreach

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    Online signatures now at 2012, was hoping for more of an increase but at least the number has gone up.
     
    MEMarge, FMMM1 and Michiel Tack like this.
  11. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    You could circulate the paper version in your local ME/CFS support group or even among your friends and family, and then mail it when you have enough signatures. That's an effective method to can give you a lot of signatures. I think there were 3574 paper signatures from Germany and Austria this way.
     
    MEMarge, strategist and Andy like this.
  12. Andy

    Andy Committee Member & Outreach

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    I hope lots of people do that, personally I've not got enough energy or time to organise that kind of thing.

    Out of interest, I looked at the analytics for the forum's tweet and Facebook post above.
    Twitter, 2,104 people saw the tweet, 96 clicked on the link
    Facebook, 733 reached, 43 clicked on the link.

    And in the time period after posting those on social media, 56 people signed the petition.
     
  13. ringding

    ringding Senior Member (Voting Rights)

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    I've shared the links far and wide, but only had a few respond saying that they've signed up. TBH, I'm surprised that the paper version can so comprehensively outstrip online signatures!

    I wish I'd thought of getting someone to take a papercopy along to the local group meets. Too late now.

    ETA: just re-read the comments above which imply that it's not too late for UK signatories to a paper copy. So will see what can be arranged.
     
  14. strategist

    strategist Senior Member (Voting Rights)

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    The German speaking countries are finally joining the movement. :)

    I also read that there will be a TV transmission on ME/CFS in Germany in a few days.
     
  15. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Can you sign it if you live in a country which has just left the EU?
     
  16. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Yes. People living outside the EU (which now includes citizens of the United Kingdom) cannot sign the online version but they can sign the paper version.

    To sign the paper version:

    1) Print out this template and fill in your contact information and signature:


    2) Make a photograph of the hand-signed paper sheet or scan it and send it to: eu.me.petition@gmail.com
    Please make sure the scans or photos are sharp and well-lit.

    Thanks for your support!
     
  17. ringding

    ringding Senior Member (Voting Rights)

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    Thanks Michiel, that's very useful.
     
    Michiel Tack and It's M.E. Linda like this.

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