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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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New advocacy group starting: The ME Action Network

Aileen

Senior Member
Messages
615
Location
Canada
Very poor choice of name. Here in Canada, our main patient organization, in existance for over 20 years, is called the National ME/FM Action Network. Since this new organization's name is so similar, it makes me wonder how knowledgable the people behind it are. We really don't need this kind of confusion.

The CFIDS Association of America's name change isn't helping. With all the new ones coming on board, I don't know who anyone is anymore. Just what a bunch of people with cognitive dysfunction need.

With all the new players in the last couple of years another new one is the last thing we need. I think we are getting too many groups with overlapping and/or competing goals. Not good. It will be a nightmare for fundraising. That is already hard enough now.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Ive never heard of them but are interested to find out more about them too.
.....

I dont see an issue in the name with the group in canada which lots of people arent aware of. The FM in the name to me really distinguishes the two apart.

I think we are getting too many groups with overlapping and/or competing goals

But there isnt a lot of international groups and how about big well known international ones? That still needs to occur. Ask the general public of an international ME group and they wouldnt be able to give you one. In fact most of us wouldnt be able to give one.. right now if something asked me that, I couldnt think of an answer.

Maybe a group will form which will be more successful then those previously (at that point international groups can always end up becoming merged at a later date with the not as successful being incorpated into the successful). Two groups trying to fund raise etc or whatever for us surely are better then one.

I personally dont like FM groups, ME can be drowned out in groups as there can be so many more in these groups with FM which is more common. (Ive had personal experience of ME/CFS group being drowned out by everyone having FM when I was at a meeting, I really felt out of place as I think there was only me and one other with ME). Im very happy when just ME gets focused on rather then any one of its symptoms dominating which FM in a name leads too.

You think the names are too alike. I think they are quite different with one I actually wouldnt support due to its name and one I would. There isnt many groups out there at all with just ME in their name (leaving out CFS and FM) and there is a group of us who give more backing to ME groups with the focus on ME which is an illness in which no one symptom dominates.
 
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Countrygirl

Senior Member
Messages
5,429
Location
UK
Does that first link work for people? I cant get the page up and I dont do FB.

Morning Tania, :) (well, it is here and the sun is shining............a miraculous event in the UK so far this summer),

Both the links take you to a FB page, one so you can sign up and the other to read their new page. I don't know of any other links yet. Hope you ,manage to found one so you can join too.

Power in numbers.......especially if it's global.

C.G..
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
http://meactionnetwork.org/

https://www.facebook.com/pages/The-MEAction-Network/1408335399448862

Does anyone know about this new group that is starting up? From what I can gather, it is proposing to be a world-wide ME advocacy group called the ME Action Network.

I have forwarded my e-mail address to them and have received a prompt response. Perhaps others can tell us more about it.

C.G.

Jen Brea
May 29 · Edited
"I am proud to be a member of what I believe will be a world-changing movement. We don't need to worry about whether an organization always represents our diverse needs or interests if we are the organization. http://meaction.net/ #MEAction http://bit.ly/MEAction

10344291_10100254088306802_549351890243450021_o.jpg


"That's a much longer conversation and some of that is a bit dependent on where we end up after we finish development (i.e., check with me in a few months!). But one big difference is that we aren't really aiming to be an advocacy organization. We want to be a platform: decentralized, organic, and with a few basic guiding principles but no unifying stance or position. We don't aspire to speak with one voice or to be united. We aspire to help our diverse community become more connected and to do what they're already doing, better. We aim to provide tools and training that help people to become even more effective advocates and activists, and to leverage the virtual and dispersed nature of our community as a strength, rather than a weakness.

To analogize to the conference world, we're not TED or Davos. We're more like an un-conference (http://en.wikipedia.org/wiki/Unconference). Both approaches to organization have their comparative strengths and I think our community needs both.

We're not really the people, we're not the ideas, we're not the plan. We're just the infrastructure. (Although, I'm pretty sure I will use that infrastructure to hatch one or two schemes of my own, and hope others decide it will be useful to them as well.)

I know that all sounds rather vague, but showing is much better than explaining at this point! We hope to launch this fall...."

Read more: Facebook: https://www.facebook.com/photo.php?fbid=10100254088306802&set=a.569787534062.2110458.1101660&type=1
 

Tuha

Senior Member
Messages
638
I am also not happy that there are more an more groups/organisations.
But I really like the concept even if I dont know too much what this group would like to do and how it will work.
What I like is that you have to subscribe with you email adress - so on the end there will be a mailing list with potentially many email adresses. I think the email communication is the only way how to reach very quickly many patients. Many patients are members of many groups but they dont go there regulary. But almost everyone check his email almost every day.
try to call for an action now and you will spend days just by spreading the word and you will not get many patients.
Btw. I dont see there any international advocacy ME organisation/group which would have many members and could achieve anything by pushing with its numbers.
 

manna

Senior Member
Messages
392
no indication of what they're about, goals or anything..edit: oh i see something now, thanks
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
If Jen Brea's in it, that's good enough for me! She's very innovative and connected, and she's got the sort of public profile in the ME world that can get other PWME on board. And she's only one of the network!

Looking forward to seeing this get underway.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
There's a clever thing the site does when you put your email address in - it gives you the opportunity to put in someone else's email that you want to know about the site and provides buttons so you can 'like' it on FB etc. - very good.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
If Jen Brea's in it, that's good enough for me! She's very innovative and connected, and she's got the sort of public profile in the ME world that can get other PWME on board. And she's only one of the network!

thanks, I thought I recognised her name but I still cant figure out where from seeing I only tend to nowdays hang around PR.
..............................

But almost everyone check his email almost every day.

Tuha. Unfortunately many of us dont as its just too much. I only check mine about once every 3 weeks and the only place I keep up with some is here. If I was worrying about emails, I just wouldnt be here nowhere near as much as something would have to give.

Its very hard to unite the ME world due to things like that.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Countrygirl. So you have sun, while I in Australia today have had rain :)
.....

We aspire to help our diverse community become more connected and to do what they're already doing, better. We aim to provide tools and training that help people to become even more effective advocates and activists, and to leverage the virtual and dispersed nature of our community as a strength, rather than a weakness.

Well I can say that is something I certainly need. Im trying my hardest to advocate for myself and just dont seem to be effective at all, due to this, I just dont get the support I need. (example of this is my thread in the treatment section). I could do with tips and other help to be able to do this better!!. Sounds like if this group takes off it could be a great help to all the other groups out there.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
thanks, I thought I recognised her name but I still cant figure out where from seeing I only tend to nowdays hang around PR.

She's the director of the Canary in a Coalmine documentary and she's also set up the 'Thrive Show', an online video programme with interviews - she did a great one lately with a key guy from the AIDS 'ACT UP' movement, and on May 12 had a panel show with Dr Leonard Jason and others (there goes my memory) on what PWME should be doing for advocacy.

http://www.canaryinacoalminefilm.com/#!filmmakers/c1ijq
 

Tuha

Senior Member
Messages
638
Tuha. Unfortunately many of us dont as its just too much. I only check mine about once every 3 weeks and the only place I keep up with some is here. If I was worrying about emails, I just wouldnt be here nowhere near as much as something would have to give.

Its very hard to unite the ME world due to things like that.

I know that for many patients it´s exhausting to check their email. Still I think it´s the most effective way how to unite the patients. I was thinking about creating such a mailing list already for a long time and when I was talking to many patients - most of them check their emails daily. With this illness we will never find the best solution for everyone. I am very keen to see what Jen will create with this project
 

Min

Guest
Messages
1,387
Location
UK
Thanks.

Has this group any connection to ME Action UK does anyone know please, or does it just have a similar name?
 

Aileen

Senior Member
Messages
615
Location
Canada
Ive never heard of them but are interested to find out more about them too.
.....
I dont see an issue in the name with the group in canada which lots of people arent aware of. The FM in the name to me really distinguishes the two apart.
Just a group in lowly, worthless Canada so who cares, right? Those Canadians, good to lean on when you want help, but otherwise irrelevant. We got it. This attitude keeps popping up from different people on different threads. It's getting old.

You think the names are too alike. I think they are quite different with one I actually wouldnt support due to its name and one I would. There isnt many groups out there at all with just ME in their name (leaving out CFS and FM) and there is a group of us who give more backing to ME groups with the focus on ME which is an illness in which no one symptom dominates

The National ME/FM Action Network is the organization that gave you the Canadian Consensus Criteria, Tania.

And it sponsored the International conference at which the XMRV scandal blew open. And got ME officially recognized by the government in Canada. And tries to educate the Canadian politicians and public about the illness.

And it has an excellent website where you can read and download all kinds of information. This includes educational materials for teachers and parents of children with ME.

So sorry you didn't even bother to google the name. Nice to know all the work we've done to benefit everyone including YOU means nothing because FM is in the name. Many patients have both ME and FM. That does not make them less deserving of membership.

Also interesting to note that someone would turn up their nose at a long standing organization and declare they are not worth supporting, yet tell us you would support a new group that is currently nothing but a name. It could be a group of bird watchers for all we know!

:devil::devil::devil::devil::devil::devil:
 
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