Step-by-Step Guide and FAQ: “Meet your MP about ME” campaign

Meet your MP about ME

Step-by-Step Guide and FAQ


Summary of steps:

  1. Find your MP using your postal code.
  2. Request a 20 minute meeting with your MP by sending them an email (template below – include your full address so your MP knows you’re their constituent) with our brief video and this Facts and Data About ME in Canada.
  3. At the meeting, use our Presentation to help tell your MP about ME.
  4. Ask for their signature to support the Open Letter to Health Minister Petitpas Taylor and for a photo of you with them and their signed letter to post on social media.
  5. Share the results of your meeting with Millions Missing Canada at MillionsMissingCanada@gmail.com and the ME community on our Facebook.

What?


Why?

Because all Canadians need Health Minister Petitpas Taylor to:

  • Stop the Epidemic:
    • there was a 38% increase in ME diagnosis in 2015 over 2014
    • more than 560,000 Canadians are suffering with ME
  • Stop the Harm:
    • from the systemic bias against ME / patients from policy makers to physicians
    • Canadians with ME are physically harmed by contraindicated treatment
    • and psychologically traumatized by physicians that deny ME is a real disease
  • Fund the Research:
    • we have near zero research funding from Health Canada
    • no ME research funding = no ME researchers = no ME research
  • Start the Treatment:
    • Fast track Ampligen, the only medication approved for ME and available in other countries
    • Increase access to appropriate testing and antivirals
    • Increase access to off-label medications such as cancer and HIV medications

When?

  • Now!  Before MPs go back to Ottawa in mid-September

How?

Steps:

  1. Email your MP this email (template below) with this video and Facts and Data About ME in Canada to request a meeting about ME. Find your MPs email and phone contact info.
  2. Bring a paper copy of the Open Letter to your meeting (in case your MP did not have time to review before the meeting).
  3. Ask your MP if you could show them this Presentation that would take about 8 – 10 minutes. Either:
    • print a paper copy, or
    • bring an electronic version on a usb stick or on a laptop, or
    • email link to MP ahead of time
  4. Ask your MP for support by signing the Open Letter online petition and the paper copy.
    • MPs are generally very pressed for time and may be ready with an answer for your request to sign the Open Letter to Minister Petitpas Taylor:
      • If they agree to sign, great, mission accomplished!
      • If they decline, ask why?

 

 

  • Your MP may ask about your personal experience living with ME. Be concise in 2 – 3 minutes by:
    • contrasting life before ME with life with ME
    • your experience with the health care system (diagnosis, (mis)treatments, stigma)
    • and accessing supports (home care, disability insurance)

 

  1.  Ask for a photo with your MP.
  2.  Send Millions Missing Canada an email (millionsmissingcanada@gmail.com) or share directly on our Facebook page to let the ME community know if your MP signed – and post pic and thanks on your MPs facebook too.

Where?

  • Nationwide! How great would it be if we had at least one ME rep in every riding meeting with their MP about ME!

Who?

  • You!  Be a ME representative to help change how Canadians with ME are (not) treated in our health care system: Stop the harm. Fund the research. Start the treatment.

Do you have an email template I can send my MP?

  • Yes: Contact your MP by email using this template and this video

 

Hello MP _________,

I am a constituent in your riding and want to make you aware of a significant health crisis happening to many Canadians across Canada.

According to the Canadian Community Health Survey in 2015:

  • more than 560,000 Canadians are living with myalgic encephalomyelitis (ME)
  • an increase of 38% over the previous year

As ME occurs in sporadic and epidemic forms, it would appear that we are experiencing another ME epidemic. About 25% of Canadians with ME are so ill they are housebound or bedridden.

Recent research has found “something in the serum” of people with ME, raising concerns about the safety of our blood supply.

Here is a link to a very short video (only 1:20) about ME created by Millions Missing Canada, a patient advocacy group.

Also, here is a link to Facts and Data About ME in Canada with Health Canada data.

I would like to meet with you asap about this urgent health care issue. I would like to meet (PICK ONE):

  • in person
  • via skype or facetime
  • by phone
  • by email
  • I would like Millions Missing Canada to meet with you on my behalf

Thank you in advance for your time.

Sincerely,

Your Name

Your street, city, postal code address (so your MP knows you’re their constituent)

 

Once the meeting has been scheduled

      • Notify MMC about the meeting at MillionsMissingCanada@gmail so we can track our collective progress and ensure we’re not repeating efforts.

 

I want to call my MPs office to make an appointment – do you have a phone script?

  • Yes: Here is a phone script to help when contacting your MP
    • Hello, my name is _____, and I am a constituent in MP’s ___________riding.
    • I am suffering with a disease that receives practically no research funding and there are no treatments available.
    • The disease is called myalgic encephalomyelitis, or ME, and about 25% of people with ME are so ill they are house or bed bound.
    • What’s even more disturbing, is that there was a 38% increase in ME diagnosis in 2015 over the previous year.
    • So that over 560,000 Canadians are living and suffering with ME.
    • That is more than multiple sclerosis, Alzheimer’s, Parkinson’s, epilepsy, and AIDS combined.
    • The vast majority of doctors don’t know, or are ill-informed about ME, and many Canadians are made sicker by contraindicated treatment.
    • I have been in contact with a national ME patient group, Millions Missing Canada, about the ME crisis – and we are reaching out to MPs to make a brief presentation about the facts about ME and this sudden increase in ME diagnosis and to ask for your support of our Open Letter to Health Minister Petitpas Taylor.
    • May I please schedule a brief meeting to talk about what appears to be a ME epidemic?
      • I can meet in person….
      • I am too ill to meet in person, but can meet by phone or skype…
      • I am too ill to meet, but would like a representative from Millions Missing Canada to meet with you on my behalf
        • Then email MMC and copy your MP so we can arrange a meeting with your MP (either in person or via skype or phone)

 

What else can I do to prepare for the meeting?

  • Preparing for your meeting:
    • Review the Presentation
    • Practice telling your own story in 2 – 3 minutes about living with ME and the health care system
    • Review Facts and Data About ME in Canada
    • The morning of your meeting, email the link to the presentation to your MP so they already have it for your meeting.
    • Or, if you are taking a paper copy of the Presentation instead of viewing it online, bring 2 paper copies of the presentation.

 

What should I consider for the meeting?

  • Meeting with your MP:
    • Arrive a few minutes early
    • Be the most charming version of yourself – its human nature to be more inclined to help people that make us feel good
    • Start by thanking your MP for their time and attention in their busy schedule
    • Tell your MP that you have a 8 – 10 minute Presentation created by Millions Missing Canada with info you’d like to share
      • Send email link ahead of time or send link in real time
    • Add 2 – 3 minute version of personal story of living with ME and experiences with the health care system
    • Ask MP to support you and other Canadians living with ME by signing the Open Letter petition and paper copy.
      • If your MP won’t sign, ask why not so we can monitor the reasons and respond to them if necessary
    • Ask for a photo with your MP that you and MMC can post on Facebook
    • Thank your MP for their time and support and let them know we will keep them updated

 

What do I do after the meeting?

  • Post meeting:
    • Email MMC with an update or post on our Facebook page – did your MP agree to sign?
    • Send pic with MP to MMC, or post on Facebook
    • Send your MP a thank you email
    • Thank your MP publicly on Facebook or twitter – include the pic and tag your MP so they know you’ve made the post
    • Reward yourself with something nice (mmmm, chocolate) and practice pacing and self care for recovery – you deserve it.