Advocacy: “Meet your MP about ME”

ME needs to be a priority for new Health Minister Ginette Petitpas Taylor in order to achieve equitable research funding for ME and access to appropriate treatments for patients.

Key to that success is first making our MPs aware of the 37.6% increase in ME diagnosis in 2015,  that more than 560,000 Canadians are living with ME, and yet there is a total lack of response, research, funding and treatment.

With that awareness, we can then ask MPs support of the Open Letter to Minister Petitpas Taylor. The Open Letter calls for an emergency response to the apparent ME epidemic including research, funding and treatment.

To help gain MP signatures to the Open Letter, we’ve developed the “Meet your MP about ME” campaign with a video and document with ME fact and data to help you get the meeting, and a concise presentation to help get your MPs signature at the meeting.

Below is a step-by-step guide to a successful meeting with your MP.

  1. Find your MP using your postal code.

  2. Request a 20 minute meeting with your MP by sending them an email (include your full address so your MP knows you’re their constituent) with our brief video and this link to Facts and Data about ME in Canada.

  3. Use our Presentation to help tell your MP about ME at your meeting (in person or by skype or phone).

  4. Ask for your MPs support by signing a printed copy of the Open Letter to Health Minister Petitpas Taylor. And then take a picture with you, your MP and their signed letter to share.

  5. Share the results of your meeting and your pic with Millions Missing Canada  MillionsMissingCanada@gmail.com and on Facebook.

Check out our Step by Step Guide and FAQ for more info about the Meet your MP about ME campaign.

 

10 comments on “Advocacy: “Meet your MP about ME”

  1. Susan P says:

    Thank you for all that you are doing, MillionsMissingCanada, to blast M.E. awareness into the 21st century. We want our lives back. Enough of this nonsense with no bio-medical treatments; indeed no treatments at all — only management techniques for a horrid disease that leaves us housebound and for some bedbound–and this is for years on end. Who can live like this ?!! What a ridiculous concept — management techniques and no real medical treatments. We want our healthy, active, productive lives back. Our families want and need us back in circulation; we desperately want that too. As someone else has said — the situation regarding the neglect and abuse of persons with Myalgic Encephalomyelitis is a ‘national disgrace’.

    1. Scott says:

      “National disgrace” is right. Overcoming the institutional bias is our challenge. As if being sick and disabled wasn’t hard enough, but then to have to fight for even basic health care is disgraceful.

  2. Cindy Downey says:

    Hi MMC,

    Fabulous work! This is super! Great to see all the info collected in one spot. And, the 150,000 one year increase in ME diagnoses, was confirmed by the federal Health Ministry during the August 9, 2017, CTV National News:
    http://www.ctvnews.ca/health/chronic-fatigue-syndrome-in-canada-even-worse-than-we-thought-survey-1.3539595

    Hope for meaningful help soon – $88 million per year for research; thorough, appropriate medical education for ALL health care practitioners; proper awareness for the media and the public; and effective treatment! Fast track Ampligen. Study, and apply Rituximab.

    Thank you so very much for this, and for helping build awareness about this prevalent, tragic and deplorable situation!

    Best regards,
    Cindy Downey

    1. Scott says:

      Thanks Cindy. As you point out, if we had equitable research funding, and a Health Minister showing leadership, we’d be well on our way to treatment access.

  3. Gilbert Laferriere says:

    I don’t understand well, we are 560,000 people with the ME and we are about 2000 signatures for health minister mme Philpott and we still missing 500 signatures for sending are petition. Something is wrong with the numbers or with the implication.

    1. Scott says:

      It is puzzling. Perhaps many factors contribute: institutional bias, social and medical stigma, and a patient population very sick and disabled and often isolated – but the biggest factor is the total lack of funding, and the ignore and deny ME attitude of successive governments.

      The Health Minister, with a simple press conference legitimatizing ME and a commitment to meaningful funding, could easily start to reverse all the damage Health Canada has done to Canadians living with ME.

      Maybe new Health Minister Petitpas Taylor will have the necessary leadership skills.

  4. Jayne says:

    Can I suggest getting this action on meaction.net along with Jennifer Brea and her documentary ‘Unrest’?
    I had difficulty finding the millionsmissingcanada fb page – my brainfog and technology – but ‘Unrest’ is getting all sorts of publicity and is being used to create a movement and harness actions like this one. Further, they are currently hosting a petition globally (that will be sent to the Canadian government) and have individual petitions for each state to support research parity.

    If I can do this for you, please let me know by pm. I would be glad to help

    1. Scott says:

      Thanks Jayne, here is our Facebook where you’ll find lots our of sharing of Unrest promos: https://www.facebook.com/MillionsMissingCanada/

  5. Kathryn Larouche Imler says:

    The data is certainly there showing where ME/FM stand against other diseases.
    Only if someone, the health minister for example, would stop for five minutes and really absorb what the letter (re ME) is saying! How could anyone in health care ignore these facts over and over. I’m ashamed of our medical system. “Do no harm”. Ignorance is harm, promoting exercise is harm, long term opioids are harm.
    I’m a retired RN and absolutely appalled at the treatment practically forced upon me over these 17 years I’ve been sick.

    1. Scott says:

      Indeed Kathryn, it is appalling our envied health care system can also inflict such harm. It must be especially dismaying given your past career.

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