Advocating for ME Research and Treatment

Tom’s Story

Hi, I'm Tom. I suffer from a disease called ME (myalgic encephalomyelitis), otherwise known as CFS (chronic fatigue…

About Myalgic Encephalomyelitis

01.

Myalgic Encephalomyelitis (ME)

A neurological disease that occurs in sporadic and epidemic forms and affects over 560,000 Canadians. Cause unknown. Recent research found hypometabolism. Canada has the highest ME rates in the world at 1.9%. A 38% increase in Canadians diagnosed with ME in 2015.

02.

ME Symptoms

ME affects multiple body systems (immune, endocrine, autonomic, cognitive), and symptoms vary widely in variety and in intensity. Hallmark symptom is worsening after activity (eg showering). ME also called ‘systemic exertion intolerance disease’.

03.

25% House or Bed Bound

“The very severe are bed bound, unable to walk or talk, and require 24 hour care. “(ME) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr. Daniel Peterson

04.

Institutional Bias against ME and ME patients

From policy makers to physicians. Evidenced by near zero ME research funding, contraindicated treatments, physician induced trauma, and no access to appropriate treatments.

05

Millions Missing in ME research funding

Research funding per HIV patient is $575. For ME patients it is 11 cents. An estimated $88 million is missing each year from ME research in Canada.

06.

Good News! (sort of)

Treatment medications: Ampligen, valcyte, valtrex and off-label cancer and HIV medications have all helped ME patients. (But Canadians can’t access them.)

The health care system bias against ME and ME patients gives us 3 Goals:

Stop the Harm

We are harmed psychologically by iatrogenic trauma and physically by contraindicated treatment.

Fund the Research

We are missing $88 million annually from ME research funding from Health Canada.

Start the Treatment

We need access to ME drug Ampligen and off-label access to cancer drugs, HIV medications and antivirals.

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Participate in our current campaigns

We are always looking for committed people to participate in our activities. Attend a rally, meet your MP or participate in the film documentary. Read the latest campaigns here and see how you can get involved!


• Make a Donation

Our organization is staffed by volunteers. However, we do have many operating costs. Please consider a contribution through our GoFundMe page. No amount is too small. Every dollar helps us to continue our fight. Thank you!


 

Quotes

  • “I wish they would stop calling us ME patients. It implies we receive health care.”

    —Canadian living with ME

  • “I just wish we got the large funding that is needed – I bet if $250 million was put on the table you would see a ton of researchers running to the field.”

    —Justin Noble, September 24, 1985 – October 13, 2016

  • “The institutional bias against ME means traumatized patients, no research funding and no treatment options.”

    —Canadian living with ME

  • “We are ghosts, us ME people. Disregarded, ignored, and at worst, not believed.”

    —Stuart Murdoch

  • “It’s the most effective prison in the world.”

    —Emma Shorter

  • “I could have had a way better chance at a full recovery but the ME diagnosis tainted my chart and I was not taken seriously by countless Canadian Doctors.”

    —Justin Noble, September 24, 1985 – October 13, 2016

  • “My only hope for ME treatment, is to hope for cancer.”

    —Canadian living with ME

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Millions Missing Canada

Advocating for ME research funding and treatment access in Canada