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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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The Canadian thread

Snookum96

Senior Member
Messages
290
Location
Ontario, Canada
Just checked out the website it's a good idea, easier to have new people join in I think. Is it easy to post back and forth to each other? I was on the discussion page but couldn't figure out how to write something:)
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Hi @FortStreetCowboy

Welcome to PR. The forum here is huge with lots of topics. If you're interested there is a forum thread where you can introduce yourself and tell us a bit about you and your experience with ME.

It's great to have another person who is interested in advocacy. I would like to do something toward highlighting the issues we face to healthcare and government. With me it will be a slow crawl toward that goal as I am not that well. Hopefully your coming here can inject some new energy to the project.
 

Snookum96

Senior Member
Messages
290
Location
Ontario, Canada
@Snowdrop
I've been chatting with @FortStreetCowboy on HR and MEAction, we have him to thank for initiating the idea to start something for Canada on the meaction site!

So we have three people! My mom has also volunteered to help out with some tasks. Hopefully as people see some of our discussions they will join in.

I agree it will be slow moving, but we can do what we can when we can. There is no rush as @Snowdrop mentioned there is an election coming up so we wouldn't be submitting anything until after that.

Feels sort of nice to be doing something productive, or trying to anyways!
 
Messages
3
Just checked out the website it's a good idea, easier to have new people join in I think. Is it easy to post back and forth to each other? I was on the discussion page but couldn't figure out how to write something:)

I just deleted the Discussion Page and set up the Blog page. Check that out and see if it works. Our first discussion should start to flush out our purpose which I think should be fairly narrow to start. I'll be corresponding with the National ME/FM Action Network this week and that may inform our direction. Do you or Snowdrop have any experience with them?

Once we get some direction, I'm sure Cort, Jennifer and Rachael will be willing to promote our efforts and help get some more people involved.
 

Snookum96

Senior Member
Messages
290
Location
Ontario, Canada
So I just took a look at the site.

You mentioned different hosts but hosting services aren't free. For example, bluehost is on the list I see. I use them for my site and it's not free. I believe all self hosted sites cost money.

I'm definitely not well enough for the complexities of self hosting and managing a site.

Perhaps a hosted site or using meaction to launch the petition would be better to start unless one of us is really good at that stuff or is well enough to devote a lot of time to it? What do you guys think?

Edit: we could use my site, but I swear on there and stuff in my blog so i don't think it would be a good public image lol
 
Messages
3
Quite a few of them, like Weebly, offer free sites but they are sub-domains. In other words the address includes "weebly.com", not a big deal for now. Did you try posting in the blog? Would you do that as a test and also try emailing me through the "Contact" page. No need for a message, just to see if it works. Thanks.
"I swear on there and stuff in my blog" - liking you more and more!
 

Snookum96

Senior Member
Messages
290
Location
Ontario, Canada
Lol at first I tried not to swear, but it just wasn't me! It's like my therapy so I figured I'd just say whatever I want!
On the blog page I clicked on comments and submitted one, so it should have come through to you.

I went to the contact page and it shows your email address. Is there supposed to be a form there? Form might be good so your email isn't displayed publicly.