Open Letter Video to Prime Minister Trudeau: May 2018

Now Is the Time for PM Trudeau
to Wake up to This National Disgrace!


We Need the Voice of All to Help Amplify This Message

We need this video to be seen and shared widely by those with ME & those without.
Tag Canadian media and reporters on social media. Post to their pages. Send a link via email.


Introduction

Severely ill with myalgic encephalomyelitis (ME), and mostly bed bound for 20 years, Barbara Fifield's impassioned plea for meaningful action in her Open Letter to Prime Minister Trudeau, is voiced by another at the Canadian ME Research Conference in Montreal.

https://www.youtube.com/watch?v=463vngcexHA

Thank you for the opportunity to share with you.

I am too severely ill with ME to travel to be here today to give voice to my experience. Thank you to Scott, for speaking my words.

The empty wheelchair on stage today, represents myself and all the other Canadians too sick with ME to leave their homes, let alone travel to Montreal.

I’d like to speak with you today while also speaking directly to the one person in Canada who has the power to immediately make changes in the lives of Canadians with ME: Prime Minister Justin Trudeau.

Prime Minister Trudeau, the central question this panel is discussing is: how is innovation transforming the ME research landscape in Canada.

My immediate thought was...there is no research landscape in Canada.

The landscape in Canada for ME has been barren in all respects, including research, and always has been. The conference today is preceded only by two workshops held nearly 30 years ago in 1989 and 1991.

So it is quite accurate to say there is no landscape at all for ME in Canada. This is exactly why people with ME are so angry.

Prime Minister, an integral part of establishing a research landscape in Canada is releasing the substantial funding necessary to begin to create one.

There's about 92 million dollars missing from equitable research funding for ME. You have the power to release those funds.

The lives of millions of people, including Canadian lives, have been destroyed by this illness. More are withering away and even dying while everyone is sitting here today.

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

Prime Minister, my biggest fear is that the outcome of this conference will be that the government’s representatives will smile and wave to their newly acquired friends, run to catch their planes and fly off into the sunset.

The takeaway plan, no doubt, will be continued discussion and additional planning, BUT will include no commitment for the profoundly ill to hang onto.

Prime Minister Trudeau, living in a perpetual state of severe impairment and gruelling torture crushes the soul.

I fear that unless you make a public commitment to increase ME funding, it will merely signal to patients ‘business as usual’, and then there will be more suicides, with more trips to Switzerland for euthanasia, and more requests for assisted suicide.

So Prime Minister, 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 yourselves for announcing funding for a collaborative partnership led by the US NIH after decades of neglecting us.

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.

Research results from this latest funding opportunity are more than five years in the future and many of us will, by then, be dead.

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 act, and to act with a sense of urgency that should be obvious, knowing Canadians with ME are harmed by the health care system, and ME research funding is less than .5% of being equitable.

I wish I was well enough to say these words to you myself. May 12th is international ME day. The Millions Missing Canada campaign is hashtag canyouseeMEnow?

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

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

Two, fund the research by committing to ramp up funding for ME research to equitable amounts in 5 years...

Three, start the treatment by committing to increasing access to medications like Valcyte and Ampligen, available to those with ME in other countries.

All of these are totally doable by you by May 12th. In fact, only you can do them.

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

#canyouseeMEnow?​

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Amplification is what we need the greatest, how do we make the most impact with it?

 

It's a powerful message, and I agree must not get kicked into the long grass.

 

So far, we have a couple of people tweeting it to Canadian media and it's being shared on Facebook.

We'd love further suggestions though. All are welcome @Alvin and @Barry.

 

Congratulations, @brf and @ScottTriGuy , for a job very well done. The message was accurate and "to the point", plus written and delivered with just the right emotional tone. The video is worth a watch, and listen. Thank you.

 

If we could scrape together the money to buy a TV commercial on a popular TV show or during the news one day (Canada day maybe even)
I know thats not realistic, or is it?

 

I suspect the cost would be huge to be worthwhile?

 

I don't know, it does often take money to make money but i have no idea what a Canadian TV commercial costs.
Maybe a facebook ad instead, newspapers are not as influential these days though trump did put one out when he wanted his way not long before he was elected.
Perhaps my idea will inspire a better idea, any takers?

 

I think given our community's limited funding, our efforts may be best focused on creating media, rather than trying to buy it. Even earning media (unique story, breaking news) is hard and they rarely get the message accurate, sometimes creating more confusion, esp around terminology.

When we create media, we control the message. The challenge is making something go viral.

 

Fair enough, but if we can get an ad that we produce on air then we control the vertical and the horizontal (i think that was a punch line from an old TV show)

 

Thank you again, @brf, and @ScottTriGuy, for this very moving and descriptive work.

One wonders why the government still fails to act given such terrible circumstances for so many.

On another tack, have you considered media students; media courses that might be interested in producing something? Or cable channels? I'm sure you have, but just in case, I thought I would mention it.

Thank you!