Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Discussion in 'Petitions' started by Hutan, Sep 4, 2023.

  1. dave30th

    dave30th Senior Member (Voting Rights)

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    Thanks. A partial sentence that was not supposed to be there.
     
  2. Hutan

    Hutan Moderator Staff Member

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    Thanks very much for writing about the petition @dave30th.

    The petition has had 73,000 views. (A substantial number of those have been by me, but, even so.)

    Here's the link: https://chng.it/xwQ9bGgcdL
     
    Ariel, Comet, Laurie P and 16 others like this.
  3. Andy

    Andy Committee Member

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  4. Andy

    Andy Committee Member

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  5. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    I’m a bit surprised that none of the major UK ME/CFS charities are listed as signatories. Have they been asked if they would like to support it?
     
    Ariel, Michelle, bobbler and 11 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    yay 5000
     
    MeSci, MEMarge, Sean and 10 others like this.
  7. Trish

    Trish Moderator Staff Member

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    The number of comments is shown on the page headed What's new.
    There are 323 comments so far.
     
    MeSci, MEMarge, Fizzlou and 9 others like this.
  8. Hutan

    Hutan Moderator Staff Member

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    Thanks so much to the European ME Coalition (EMEC) for supporting the letter.

    :emoji_bouquet:
     
  9. Hutan

    Hutan Moderator Staff Member

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    A chart of the increase in signatures over time. It doesn't include signatures from today, NZ time. You can see things have plateaued. Please do keep sharing the petition link https://chng.it/xwQ9bGgcdL if you can.

    upload_2023-9-10_7-13-53.png



    Here's the list of countries represented, and number of signatures. 57 countries.
    Top ten: UK (1586); Australia (560); US (449); Netherlands (382); Canada (373); Norway (321); France (281); Germany (194); NZ (168); Denmark (151)
    Fantastic to see some of the countries we hear less from represented, such as Bulgaria, Mexico and South Africa to pick a few.

    Argentina 2
    Australia 560
    Austria 17
    Azerbaijan 1
    Barbados 1
    Belgium 111
    Belize 1
    Brazil 6
    Bulgaria 2
    Canada 373
    Colombia 1
    Costa Rica 1
    Croatia 4
    Cyprus 1
    Czech Republic 3
    Denmark 151
    Estonia 1
    Finland 21
    France 281
    Germany 194
    Gibraltar 1
    Greece 5
    Guadeloupe 2
    Hong Kong 1
    Hungary 1
    Iceland 1
    India 4
    Ireland 24
    Isle of Man 1
    Italy 47
    Jersey 1
    Lithuania 1
    Luxembourg 1
    Malaysia 1
    Mexico 5
    Montenegro 2
    Netherlands 382
    New Zealand 168
    Norway 321
    Philippines 1
    Poland 3
    Portugal 5
    Réunion 1
    Saudi Arabia 1
    Serbia 2
    Singapore 1
    Slovakia 1
    Slovenia 1
    South Africa 11
    Spain 65
    Sweden 78
    Switzerland 23
    Thailand 1
    Trinidad & Tobago 3
    Turkey 1
    UK 1586
    US 449
    Grand Total 4934
     
    RedFox, Ariel, Jacob Richter and 18 others like this.
  10. Hutan

    Hutan Moderator Staff Member

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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  12. Hutan

    Hutan Moderator Staff Member

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    I think getting more local and national organisations added to the list of supporting organisations in the Open Letter thread is very important.

    We are working on a list of ME/CFS and Long Covid related organisations and whether they have been contacted or not, with a view to doing more contacting. If you have contacted any organisation to ask them to support the petition and circulate it to their members, please do let us know. If you are well-placed and willing to contact an organisation, please let a moderator know.

    If you can speak for an organisation and they are willing to support the open letter and have their name listed on the Open Letter thread, please let us know.

    We are having conversations with several large organisations about how they might be able to help.
     
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    it's a shame that other than tagging there is no other way of contacting members (eg by email), particularly those who maybe don't come on the forum very often.

    (I know she has retired, but @Valerie Eliot Smith might be interested).
     
  14. Hutan

    Hutan Moderator Staff Member

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    Thanks very much to Post Viral Research Aotearoa for supporting the open letter.
    https://www.pvra.nz/
    This is a New Zealand-based research foundation.
     
    ukxmrv, RedFox, Chezboo and 16 others like this.
  15. Andy

    Andy Committee Member

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  16. Andy

    Andy Committee Member

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  17. Mike Harley

    Mike Harley Senior Member (Voting Rights)

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    Thanks for the nudge, oddly I've just shared it on facebook and then come on here. Will share on Twitter/X shortly, though I don't use it much anymore (Elon Musk etc)
     
    Amw66, Joh, MEMarge and 17 others like this.
  18. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    Hello
    We've signed it individually- I think we'd be happy to do a supporting letter as physios for ME
    if that would help. Please let me know
    Michelle
     
    RedFox, mango, bobbler and 22 others like this.
  19. Andy

    Andy Committee Member

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  20. Trish

    Trish Moderator Staff Member

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    Thank you Michelle. I think a letter from Physios for ME in support would be good. I wouldn't want hundreds of people bombarding them with individual letters, hence the petition, but I think a letter from a specialist professional organisation like Physios for ME, especially now with your published book, would add useful weight behind the requests for action.
     

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