Canadian Petition, anyone willing to help?

[Snookum96]

Hello Canadians,

I recently signed up for me action.net and the question was asked about Canadians wanting to get involved in advocacy. There are only two of us so far. We just started talking about it but here is the link to the thread.

http://www.meaction.net/idea/canadian-petition-for-funding-equality/

If anyone is interested you can sign up on the site and we can get started. I think we need more than a petition but it's a good place to start.

The Dutch used this site for a petition and ended up with 56,000 signatures.

Jodie

 

[Cort]

Hello Canadians,

I recently signed up for me action.net and the question was asked about Canadians wanting to get involved in advocacy. There are only two of us so far. We just started talking about it but here is the link to the thread.

http://www.meaction.net/idea/canadian-petition-for-funding-equality/

If anyone is interested you can sign up on the site and we can get started. I think we need more than a petition but it's a good place to start.

The Dutch used this site for a petition and ended up with 56,000 signatures.

Jodie

Wow - those Dutch are really something. We should ask them how they did that. I don't think we could get that many signatures in the states....(lol). Hopefully we'll be coming up with something in the Forums that will aid finding people in local communities or countries...

 

[Snookum96]

Wow - those Dutch are really something. We should ask them how they did that. I don't think we could get that many signatures in the states....(lol). Hopefully we'll be coming up with something in the Forums that will aid finding people in local communities or countries...

Here is the link to the story about how the Dutch did it:

http://www.meaction.net/strategies-of-that-wildly-successful-dutch-petition/

it makes me a bit more hopeful, as I was thinking physical signatures might be more impactful but my limitations won't allow me to get out and do it. With a wheelchair about 20 minutes is my limit. The story says it was 10 severely ill patients who started it so maybe there's hope for us yet

 

[J William M Tweedie]

Hi Jodie, Going to post the article you cited in your last message to me through MEAction. It contains a lot of useful information and leads to more. Unsurprisingly the Canadian and US scenarios mirror each other in percentages.

Hope others join us...there is so much to do!

 

[Snookum96]

Hello,
I did find one volunteer through PR. Snowdrop is willing to help and her husband gave some information on how health funding works in Canada.

I think we need to decide on one location to share ideas. We now have meaction, this thread, and the PR thread I started to try to get volunteers? Haha our heads will start to spin!

I was thinking HR (if @Cort doesnt mind of course) or meaction or possibly a fb group might be best.

What do you think?

 

[J William M Tweedie]

I'm sorry I don't know what PR stands for! I first connected with Cort's Health Rising and learned of Simmaron Reasearch and #MEAction through posts there. The Canadian network I found through #MEA. I've got some catching up to do.

Let me think about the central location idea and I'll respond tomorrow (hopefully). I agree it's a good and practical idea. However, first instinct is we should have good links to the other sites in any case.

 

[J William M Tweedie]

Duh! Phoenix Rising.

 

[Snookum96]

Lol, I meant to answer your post earlier but had a rough day.

Btw I found a database where we can search for all CIHR (Canadian institute of health research) funding by keyword. When I'm feeling up to it I'll start assembling data.

Stupid PEM, I never would have thought that at 34 I'd get PEM from wheelchair shopping!

 

[J William M Tweedie]

PR = Phoenix Rising - Duh! I've got some catching up to do!

 

[J William M Tweedie]

There are free websites we could use. GoDaddy, Weebly, etc. I've got 2 sites up using weebly, very user friendly. Started toying with one for our purposes today. criticalfairshare.weebly.com We could also set up a FB page/ Twitter account. Nothing fancy but, as you suggested, a place for a group of us to share ideas and develop tools and have links to all the other sites so we're not duplicating efforts. Thoughts?

 

[ScottTriGuy]

Hey fellow Canadian m.e.-ers,
I'm all for getting more research funding - let me know how I can help with the process.
Scott

 

[J William M Tweedie]

Hi Scott,
Thanks for your willingness to help. I've been slowly constructing a web-site @ http://fairfundingforchronicfatiguesyndrome.weebly.com
with Snookum96's input and advice. Doing as much research as possible when able and will be formulating a strategy at some point. Initially it seemed to us too late to get a meaningful petition off the ground with the federal election not far off. We may have missed a good opportunity but it's better to do anything properly than in haste.

One of the major challenges right now is how to get members joining the site. We have no financial resources at the moment and one can only include a members' sign up feature with a monthly paid plan with Weebly ($5-$20/mo). I've used Weebly for my education related work and it was very convenient and well used by my trainees and students. However, the needs we have now are very different. If we were to follow the Dutch model, we'd have an online means of signing a petition and volunteers working the crowds at malls, other busy street sites, events, etc. First we have to get the site up and running and draw people to it.

Using a site like MEAction (they've offered) or one of Cort's, might have to be the way to go. However, I am trying to make it an all Canadian content site to build specific traffic and interest with links to all the other fantastic sites like here (HR), PR, http://iacfsme.org, and the relevant government/institutional organizations. Could it be a sister site to an established one?

I'd really appreciate some ideas to solve the problem.

Thanks again. Spread the word!

William

 

[ScottTriGuy]

Thanks William - I've got a long day tomorrow with doctor appointments and work - I may not be able to give a thoughtful reply until mid-week, but I'll be turning it over in my mind.

 

[J William M Tweedie]

Absolutely no pressure. Delighted you're willing to lend a hand when you can.

Cheers,
William

 

[ScottTriGuy]

Hi William,
You and Snookum have already done a lot of great work getting started.
Some thoughts from my adled brain:
I don't have the answer to how to situate a Canadian-m.e. site to best get folks to sign a petition to increase funding. I do like the look and feel of the MEAction site and wonder if we'd get cross-exposure there. Also, I got a 404 error message to your weebly link.
Online petitions seem to be low-demand physically, yet quick to share - hitting shopping malls and street corners seems daunting to me.

I think I'm not clear on the purpose of the petition, pardon my brain fog. To increase funding? Also, I'm not familiar with how the funding process works and where me/cfs is situated within it to even know if a petition is the most effective method. If you could edify me that'd be great.

I like the news about the Forgotten Plague documentary - and how they've set it up with Tugg for easy to distribute on a community level. Leveraging a screening of the film by making it a larger 'event' with (talkin off the top of my head) panel before/after with a celebrity, a researcher, a doctor, a patient, a federal gov't person, a pharma rep,...
Opportunity to promote website, garner signatures for petition, gain media exposure, fundraise, increase awareness, recruit volunteers,...

That's it for today - not a lot of sleep last night and I'm fading - look forward to hearing from you.
Scott

 

[J William M Tweedie]

You're asking the right questions for sure. They are what we are trying to work through. Yes, sorry about the web-site. I need to put a real email in when I get it ready enough to warrant it. Using a throwaway now and wasn't sure it would redirect to my own email. I'll set up a new one for the site. I think I changed it to www.fairfundingforcfs.weebly.com . You can see we really are in the beginning stages.

I've never tried to PM anybody here. If we can do that I'll give you my personal email.

I'm faded.
W

 

[sharon van isle]

I would like to help. I am housebound. Cognitive comes and goes. If we want funding for studies and centres of excellence maybe we can lead with the $$$$$$$$ that the Canadian federal government is paying out for (CPP ), the $$$$$$$ amount for provincial disability payments, and lost productivity. Maybe we can help them to understand M.E., the shortage of specialists and the backlog of tens of thousands waiting to get in to see one. Maybe they can look at the $$$$$$$$ we are asking for as an investment to get these sufferers treatment and back to work. We need studies and trials and large centres to diagnose and treat. Vancouver has one, yay, fantastic people from different disciplines, but they are swamped with 1000's on the wait list. The research team led by Dr. Patrick has been doing some fantastic studies and luckily a part of studies using cutting edge diagnostics. And lastly, just maybe we can also get the powers that be to see (really see) the funding inequities with the Canadian Institute of Health Reseach for ME/FM.

Sharon
Living life like I don't want a relapse.