The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

‘Twenty-Five Questions’: A Survey for the Canadian ME Community

Discussion in 'Other Health News and Research' started by ScottTriGuy, Mar 11, 2017.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    Posting on Facebook:

    https://www.facebook.com/MillionsMi...8002947894768/399381470423581/?type=3&theater

    Or go directly to the survey: http://www.surveygizmo.com/s3/3344483/New-Survey

    ‘Twenty-Five Questions’: A Survey for the Canadian ME Community

    We want to know what you, as a sufferer with Myalgic Encephalomyelitis in Canada, want our health officials to know about us.

    Please take a few minutes to fill out this survey. Most of it consists of multiple choice and will not take long to complete.

    Results will reflect the issues that Canadians with ME see as important and will be presented to Minister Philpott.

    All forms are completely anonymous and private.

    Thanks
    The Millions Missing Canada Team

    http://www.surveygizmo.com/s3/3344483/New-Survey
     
    Tunguska, joeblow604, Mij and 8 others like this.
  2. Dechi

    Dechi Senior Member

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    I did it, very cool survey and it only takes a few minutes ! All canadians should do it.
     
  3. TigerLilea

    TigerLilea Senior Member

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    Absolutely all Canadians should take the survey. Very quick!
     
  4. Oberon

    Oberon Senior Member

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    Done thanks Scott
     
  5. PatJ

    PatJ far and free I gaze

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    Done.

    If you create a future survey it would useful to include an option for those of us without a GP. My GP left town last year and since I'm housebound and partly bedbound, and live in a city with a chronic doctor shortage, I can't find a replacement. I also dread going to a doctor because I think it will do more harm than good (physically and psychologically) based on past experience with the Canadian medical system and the dismal lack of knowledge of CFS/ME.

    For Minister Philpott: it would be useful if the Canadian Government (actually, all governments) would critically review trials such as PACE before accepting the trials' conclusions. Considering the proven incompetent mess called the PACE trial, it looks like everyone who relied on it for forming policy just read the conclusions but didn't actually investigate the methods that lead to the conclusions. Anyone that has a say in recommending treatments of any kind should have training in proper study design and analysis so they can look beyond author's conclusions and see if those conclusions are based in fantasy or reality. The lack of proper review and reliance on studies run by people who have been proven to be inept and secretive when it comes to proper study design, execution, and use of the scientific method has caused incalculable harm to patients. If the same negligent behavior had been conducted by a private organization it would have long gone out of business due to class action lawsuits.
     
  6. shannah

    shannah Senior Member

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    Hi @PatJ

    Yes, accessing a knowledgeable doctor in ME and avoiding doctors completely can be big problems for us. It's only universal health care up here if we can access it.

    The last two questions allow space for people to write in their comments and address their concerns about any aspect of the Canadian health care system.
     
  7. PatJ

    PatJ far and free I gaze

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    I added the comment here because I started to think more about it after I had completed the survey. It's also useful to see if anyone else has similar thoughts and comments. A survey doesn't allow room for discussion but I expect that Scott would be interested in a discussion of survey comments.
     
    joeblow604, ScottTriGuy and L'engle like this.
  8. Old Bones

    Old Bones Senior Member

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    Does anyone know if the Canada Pension Plan (CPP) disability program is still using the following as their sole means to determine if a person with ME continues to be eligible to receive benefits? Even if their previous employment was a strictly-sedentary office job?!!!

    First day: 4 consecutive hours on a treadmill at maximum effort
    Second day: 3 consecutive hours on a treadmill at maximum effort

    If this is still the case, Health Minister Philpott should be told how utterly ill-advised this is, not to mention idiotic.
     
    PatJ and L'engle like this.
  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    Great sound byte.
     
    Kati and shannah like this.
  10. Kati

    Kati Patient in training

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    No one, even well seasoned athletes can perform 4 hours at maximum effort. In order to complete 4hours on the threadmill you need to be in the sub-anaerobic zone

    And no I do not believe CPP-D worked that way when I applied some 7 years ago.
     
    Old Bones likes this.
  11. shannah

    shannah Senior Member

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    The survey has been posted in French for the French Canadian community.

    The notice can be found
    https://www.facebook.com/MillionsMi...41828.258002947894768/401683056860089/?type=3

    Direct link to the survey:
    http://www.surveygizmo.com/s3/3422639/Millions-Missing-French-Version
    MMC Survey-French.jpg

    Petit sondage de 25 questions pour les personnes atteintes d’encéphalomyélite myalgique au Canada :

    Aidez-nous à exprimer à nos responsables de la santé publique ce qu’il en coûte de vivre avec cette maladie.

    Merci de prendre le temps de répondre. La plupart des questions sont à choix multiple. Quelques minutes suffiront pour compléter le tout.

    Grâce au sondage, les préoccupations des canadien(ne)s atteint(e)s d’EM seront entendues par la Ministre Philpott.

    Tous les formulaires reçus demeureront anonymes et confidentiels.

    Merci

    L’Équipe de Millions Missing Canada

    http://www.surveygizmo.com/s3/3422639/Millions-Missing-French-Version

    Un merci tout spécial à Hélène Côté pour la traduction impeccable qui nous permet d’offrir le sondage aux malades francophones.
     
    Kati and PatJ like this.

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