#MillionsMissing Canadian Press Request

[ScottTriGuy]

will attract people from all over the world but people who already are busy and well funded in other diseases

The target audience is the Canadian public and Min Philpott via the media - I'm not looking to recruit any of the attendees, its about increasing Min Philpott's awareness of the healthcare inequities we face.

 

[Old Bones]

I wonder about the fact, however, that it's not visible in the public sphere. I'd want it to be somewhere the average person will see it, IMO. Not speaking for #MEAction, just my 2 cents.-J

@JaimeS Absolutely. I keep waiting to "stumble upon" an accurate and supportive article in the mainstream press in Canada. I can only recall this happening once in recent memory. The fact that I look daily, and still find nothing, means our message isn't reaching those who need to hear it.

 

[Kati]

The target audience is the Canadian public and Min Philpott via the media - I'm not looking to recruit any of the attendees, its about increasing Min Philpott's awareness of the healthcare inequities we face.

Cool, @ScottTriGuy. I wonder if it's worthwile to approach other ministries as well, including the science minister and perhaps the one pertaining to equality/human rights.

 

[ScottTriGuy]

Cool, @ScottTriGuy. I wonder if it's worthwile to approach other ministries as well, including the science minister and perhaps the one pertaining to equality/human rights.

That's something to think about. They may be able to exert 'peer' pressure.

 

[shannah]

The target audience is the Canadian public and Min Philpott via the media - I'm not looking to recruit any of the attendees, its about increasing Min Philpott's awareness of the healthcare inequities we face.

Perhaps we could send shoes to a central location where there is no need for someone to collect and deliver them. I'm not sure where though. Minister Philpott's office would not get the media attention. Perhaps an idea such as sending them directly to a newspaper with notes explaining our protest but that we're too ill ourselves to deliver them might be a novel approach. If there were enough shoes, you would think they would publish a story.

 

[concepcion]

We are facing disdain, sigma and misinformation. The health minister mandate is to support evidence-based medicine, and if you look at the evidence, it's CBT & GET that comes first and foremost on Cochrane review. It's been like that for decades, why would the government choose to fund research for a disease that is not in dr's or researchers' priorities, when there are diseases/risk factors that are supposedly more deserving than us, like poverty, addiction, health on indian reserves, HIV, Zika, concussions in sport, and yes, brain tumors with the renewed interest now that a canadian celebrity has it and now that a physician publicly asked for more research for brain tumors?

I suggest that now is the time to continue campaigning, perhaps with each one of us requesting visits with our MP and MLA. Perhaps with an in-person MillionsMissing in all cities across Canada. Perhaps sending our shoes to the health minister. (Say the health minister receives 300 pairs of shoes? )

Great idea Kati.
If we want this to be a co-ordinated campaign we may need to wait a few weeks to let people recover from the last one.

 

[concepcion]

Disappointed. So far as I can see, no Canadian press has covered this, still. For shame!

We did hear from a source on Parliament Hill that "the campaign was effective. Many staff people mentioned it to me last week. Re: media, keep hammering them. It's really a game of persistence with them."
This was great news! And very encouraging advice.

 

[JaimeS]

Not sure what you mean? That global HIV activists would be pissed at ME activists?

That it MAY appear to the public at large as though we are saying "don't fund them; fund us." I KNOW that's not what we'd be thinking, but as one of the only 'getting along with people' books I read once said, "it can't just BE good. It has to look good and sound good or it's no good." And that goes double in the world of public perception.

It's definitely a delicate balance. We want to say, "ME should be considered as worthy of time, energy and funding as other illnesses with similar disease-burdens and quality of life." We don't want to come across as considering ourselves MORE worthy of time, energy and funding than other illnesses.

I don't want to argue back and forth about how it might appear, considering it doesn't exist, yet! Just considering the optics of the thing...

Additionally, I never fully crashed from the protest (I'm sure many of you are going ) but it's more like I've been teetering at the brink of one for days. My thinking isn't the clearest right now, IOW, so just mull it over a bit.

I wish we could convince those who are being funded to show up and protest on our behalf. Can you imagine the power THAT would have?

"Why are you funding my disease and not theirs?"

Very brave and very powerful.

Again, not speaking as #MEAction with any of this, and probably shouldn't be speaking even for myself RN.

-J

 

[ScottTriGuy]

Very valid point @JaimeS - crafting and communicating a clear message would be paramount.

 

[JaimeS]

Here's how to do it! Speech from Carol Head, will be published in its entirety on #MEAction this morning:

There are so many who suffer. The IOM report estimates 836,000 to 2.5 million Americans suffer with this illness. The CDC has estimated 1 million Americans. And certainly there are millions upon millions around the world. This is NOT a rare disease. Most importantly, ME/CFS federal research spending is unconscionably low. On a percentage basis per patient, spending on ME/CFS per patient is:

• 2% of the spending on lupus
• 2% of the spending on multiple sclerosis
• 9% of the spending on autism

Certainly those are serious medical problems; I don’t disparage in any way our government’s commitment on spending on them. I simply must illustrate the enormous disparity in spending on ME.

Nicely done.

-J