PM Trudeau: Why are You Completely Ignoring the Public Health Disaster that is ME?

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#MillionsMissing Canada Campaigns

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The Empty Wheelchair Here Tonight…

“represents the folks that are housebound, bedbound - too sick to come here tonight, too sick to run errands, too sick to be seen in public.




In early May, Canada had its very first ME Research Conference and Millions Missing Canada was invited to speak at one of the Panel Discussions where the topic was, ‘describe the ME research landscape in Canada’.

So another co-founder of Milions Missing Canada is Barbara Fifield and Barbara Fifield has had ME for 35 years, the last 20 she’s been mostly bedbound, so she obviously is too ill to travel to Montreal to give a speech – too ill to leave her home.

So I delivered Barb’s speech for her in Montreal and I’d like to share part of that with you tonight. I know Barb’s watching on the live stream.

These are Barb’s words:

I am too severely ill with ME to travel, to participate in person, or to give voice to my experience of life with ME in our health care system.

The empty wheelchair represents myself and all the other Canadians too sick and disabled with ME to leave their homes or beds.

I’d like to speak to people watching the live stream right now while also speaking directly to the one person in Canada who has the power to make immediate meaningful change in the lives of Canadians with ME and that person is Prime Minister Justin Trudeau.

The lives of millions of people around the world, including hundreds of thousands of Canadian lives, have been destroyed by this illness. Living in a perpetual state of severe impairment and grueling torture crushes the soul. More are withering away and dying while we are here today.

I have been ill with ME for 35 years. I have been severely ill and mostly bed bound for the last 20 years. My son Andrew, the light of my life, is also severely ill with ME.

So I know what it is like to live - and suffer - with ME. I know what it is like to have my life dreams torn away. I know what it is like to witness successive Prime Ministers fail to stop the medical harm.

Prime Minister, I do not fear death. I would welcome its sweet relief if not for my love for my son, also severely impacted by ME.

I do fear that unless you make a public commitment to increase ME research funding and educate doctors about ME, our health care system won’t change how it mistreats people with ME.

And then there will be more suicides, more trips to Switzerland for euthanasia, more requests for assisted death here in Canada.

Did you know Prime Minister, that research funding for other diseases like MS, Epilepsy, Parkinson’s and Alzheimer’s is about $158 per patient?

But for ME patients it is 12 cents.

Did you know that Statistics Canada says there are over 580k Canadians have been diagnosed with ME?

Did you know Prime Minister that 25% of them are too sick and disabled to leave their homes or bed? That’s 120,000 people.

Did you know that physicians have been mis-educated or uneducated about ME and often cause harm to patients, or deny ME is a disease?

No of course you didn’t, because you are - unwittingly - part of the problem.

So Prime Minister Trudeau, don’t try to placate us by telling us you care and you’re working on it. That does nothing to ease the pain.

Don’t congratulate yourself for announcing an insulting pittance in research funding after decades of neglecting us. Research results are more than five years away and many of us will, by then, be dead.

Don't assume you know what's best for ME patients and then exclude us from the decision-making process. We are the experts on ME, you are the student.

Don’t tell us that science takes time. Science takes money.

For too long we’ve held onto nothing but hope. We now need promises to be made and kept.

We need you Prime Minister Trudeau to do your job, and to act with a sense of urgency that should be obvious when a public health disaster happens, like with AIDS – like with SARS – like with H1N1.

Why are you completely ignoring the public health disaster that is ME?

I wish I was well enough to say all these words directly to you myself Prime Minister Trudeau.

The Millions Missing Canada spring campaign is #canyouseeMEnow?

And I challenge you Prime Minister Trudeau to do 3 things to acknowledge and “see” ME patients.

One, stop the harm - by giving a public apology to Canadians with ME for the decades of neglect and harm successive governments have perpetuated.

Two, fund the research - by committing to ramp up funding for ME research to equitable amounts of $92 million over the course of 5 years.

And Three, start the treatment - by opening up access to medications like Ampligen and Valcyte available in other countries and ensuring that our doctors have the proper training to care for us.

You are the one person in Canada who has the power to help Canadians with ME, so I am talking directly to you from my sick bed Prime Minister Trudeau...and I’m asking

#canyouseeMEnow?"

U of T Screening of Unrest June 06, 2018
Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Millions Missing,
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