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

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

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  1. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    Thank you very much to the following organisations for adding their support to the Open Letter, and for promoting the petition to their members:

    Millions Missing Stavanger (Norway)

    Norwegian ME-association

    ME/CFS Israel


    5630 signatures on the petition

    We'd like to send emails to ME/CFS organisations in a range of countries where English is not a first language e.g. Italy, Sweden, Spain, Portugal, Poland. If any members have contacts in such countries or even just proficiency in the relevant languages and are willing to send an email, please let us know. We can help with words for the email in English.
     
    Hutan, Sep 12, 2023
    #41
    Michelle, MSEsperanza, sebaaa and 16 others like this.
  2. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    An update has been posted on the petition site:

     
    Hutan, Sep 12, 2023
    #42
    MSEsperanza, Chezboo, EzzieD and 17 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,842
    Location:
    Canada
    Not even a word from Bastian makes her whole involvement, or lack thereof, seem even worse. She is the face of this now, she is supposed to be independent from Cochrane. Cochrane has a lot to deal with here, they will consult with their lawyers and no doubt do a lot of coordination with the very people responsible for this.

    Probably none of it is good for us, but they have a lot to deal with. Including how they could handle the very public, and I have no doubt very real, threats to their reputation from people like Clare Gerada, and how it could affect their funding.

    Bastian can speak for herself. She chose not to say anything at all. To me, that says everything.
     
    rvallee, Sep 12, 2023
    #43
    Chezboo, ukxmrv, Wyva and 6 others like this.
  4. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    Cochrane has much bigger problems than us, including, as far as I can see, how it can continue to exist.

    That's (somewhat perversely), not good for us, because key decisionmakers probably don't have the bandwidth to deal with the problem they have created for people with ME/CFS. Also they will be unwilling to bite any hands that are still feeding them, which appears to be pro-BPS individuals and organisations. And also they will be unwilling to admit, at the same time as they are trying to convince potential funders of Cochrane's importance, that swathes of their reviews are in fact misleading due to a poor understanding of research methodology.
     
    Hutan, Sep 12, 2023
    #44
    Michelle, MSEsperanza, sebaaa and 17 others like this.
  5. Ash

    Ash Senior Member (Voting Rights)

    Messages:
    1,657
    Location:
    UK
    Bastian, I think needed to step down and be replaced near the beginning if she found herself unable to undertake the work in a timely fashion and with due consideration of the consequences of not doing do. If she was the victim of circumstances outside her control, this would be the logical and honourable response. To not have done so and to have left us all at the mercy of ongoing harms and prejudice, is unforgivable. We cannot get back the lost decades, decades of medical abuse and social isolation extended cruelly by three years and counting. But an immediate retraction and a public apology would go some way towards meeting basic professional obligations.
     
    Last edited: Sep 13, 2023
    Ash, Sep 13, 2023
    #45
    Lou B Lou, Chezboo, sebaaa and 10 others like this.
  6. Andy

    Andy Committee Member

    Messages:
    23,211
    Location:
    Hampshire, UK
    Andy, Sep 13, 2023
    #46
    MSEsperanza, RedFox, alktipping and 13 others like this.
  7. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

    Messages:
    316
    Have you got Long Covid Physio on your list? If not I'm happy to contact them?
     
    PhysiosforME, Sep 13, 2023
    #47
    MSEsperanza, Amw66, NelliePledge and 12 others like this.
  8. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    They are on our list to contact - so, yes, please do contact them for us :)
     
    Hutan, Sep 13, 2023
    #48
    MSEsperanza, bobbler, Simbindi and 8 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,842
    Location:
    Canada
    Their "masks don't work" review, however, very popular in conspiracy crowds. I keep seeing it used as "definitive evidence", despite Cochrane actually coming out to do damage control and insist it doesn't mean that. People who would otherwise never trust anything out of Cochrane.

    Cherry-picking, now that's something Cochrane loves that the conspiracy and antivaccine crowds equally love. It's also frequently cited by prominent minimizers, who don't seem to notice or care that conspiracy crowds love their stuff. The same people who sold "herd immunity", then "hybrid immunity", and who keep insisting that COVID is just a regular cold now.

    It wouldn't be nearly as bad if Cochrane wasn't, somehow, the "gold standard" in evidence-based medicine. This is literally the best they can do. And it's terrible. This entire model needs to be thrown into the deepest volcano in the solar system. Then nuked from orbit. And probably heavily salted, just to be sure.
     
    Last edited: Sep 13, 2023
    rvallee, Sep 13, 2023
    #49
    Lou B Lou, alktipping, Ash and 3 others like this.
  10. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    Fantastic to have the support of 25% ME Group, United Kingdom.
     
    Hutan, Sep 14, 2023
    #50
    MSEsperanza, Sean, Amw66 and 11 others like this.
  11. Andy

    Andy Committee Member

    Messages:
    23,211
    Location:
    Hampshire, UK
    Andy, Sep 14, 2023
    #51
    MSEsperanza, Amw66, alktipping and 11 others like this.
  12. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    A big thank you to the World ME Alliance for signing the open letter, and also for promoting the petition to its international network of member patient organisations.

    Particular thanks to Sian Leary, Head of Advocacy and Communications, for her support. :emoji_blossom:
     
    Hutan, Sep 14, 2023
    #52
    Michelle, MEMarge, MSEsperanza and 22 others like this.
  13. Trish

    Trish Moderator Staff Member

    Messages:
    55,940
    Location:
    UK
    Many thanks to the 12ME group in Belgium for signing the open letter and for sharing the petition with their Facebook group.
     
    Trish, Sep 14, 2023
    #53
    MeSci, livinglighter, Ash and 15 others like this.
  14. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    3,798
    Thanks to the Norwegian ME Association and the local chapters in Trøndelag, Rogaland and Møre and Romsdal, and ME Foreldrene (ME Parents, Norway) for signing the petition and sharing it to their members!
     
    Midnattsol, Sep 14, 2023
    #54
    MEMarge, MeSci, livinglighter and 15 others like this.
  15. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    Here's the report of signatures by country:
    Country: Name (Count All)
    As I read that list, I think of the people who are the sole signatories of their country. I hope they have support around them.

    Top ten countries: UK 1824, Australia 699, US 536, Canada 498, Netherlands 410, Norway 372, France 340, NZ 282, Germany 211, Denmark 170
     
    Hutan, Sep 15, 2023
    #55
    Lou B Lou, rvallee, MeSci and 13 others like this.
  16. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,851
    Location:
    Aotearoa New Zealand
    upload_2023-9-15_13-33-37.png

    Here's the daily increase in signatures. Things are tracking pretty well, there's a steady increase.

    If you want to check out the organisations that have signed the open letter, have a look here.
    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    It would be great to get more organisations supporting the letter. If you don't see your organisation on the list, perhaps you can ask them to support it. It can take organisations a while to make a decision.

    We do know that petitions aren't the way science or clinical guidance outcomes should be decided; the open letter doesn't ask for that. What is needed is a review process that is unbiased, well done and timely.
     
    Hutan, Sep 15, 2023
    #56
    Michelle, rvallee, MeSci and 15 others like this.
  17. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,762
    Location:
    Budapest, Hungary
    Shared it in my group and will probably share it a few more times for visibility but I don't expect a lot of signatures. I think for a lot of people here Cochrane and this "academic debate" is a bit obscure. I tried my best to explain it though and hopefully those a bit more interested in advocacy will sign.
     
    Wyva, Sep 15, 2023
    #57
    lycaena, RedFox, Laurie P and 10 others like this.
  18. Andy

    Andy Committee Member

    Messages:
    23,211
    Location:
    Hampshire, UK
    Andy, Sep 15, 2023
    #58
    Jacob Richter, Laurie P, Peter Trewhitt and 9 others like this.
  19. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,092
    Location:
    UK West Midlands
    Thanks to the U.K. ME Association for signing the letter and sharing on social media.
     
    NelliePledge, Sep 15, 2023
    #59
    Michelle, Amw66, MEMarge and 14 others like this.
  20. JohnTheJack

    JohnTheJack Moderator Staff Member

    Messages:
    4,851
    Thanks to WAMES, Welsh Association of ME & CFS Support/Cymdeithas Cefnogi ME a CFS Cymru, for signing the letter.
     
    JohnTheJack, Sep 15, 2023
    #60
    RedFox, Lou B Lou, Michelle and 16 others like this.
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