New advocacy group starting: The ME Action Network

[taniaaust1]

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.



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.

Ive never seen its website.

What XMRV scandal? as far as Im concerned there never was a scandel with that, yes many ME/CFS went and got tested with an unapproved test but that was always at a do at your own risk thing, everyone knew XMRV wasnt proven and needed more scientific confirmation at that time (hence why I was in wait and see mode all along). Many of us including myself pointed out to other ME/CFS patients that it was a do at your own risk test till confirmed. People knew it wasnt offically approved (even the ones who were doing the test were saying tha). Anything not offically approved is always do at ones own risk.

and yeah it did bit many in the butt but that's what happens when one takes risks whether with unconfirmed tests or with the experimentation treatment many of "us choose" to try. No one was forced or mislead to take a unapproved test. So I dont understand that comment you made about the canadian group exposing XMRV scandal.

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.

Im sorry that you assume that Im far weller then I are... if I was goggling everything all the time I'd be wrecked and in bed and not even be able to come here. I just really focus on this site online as that is all I can manage. Obviously you do not understand people who are extremely ill with ME.

I would of known about that group previously, I used to know who did the canadian definition but forgot. I have memory problems and forget things all the time!!! Im sorry that you dont seem to understand that either.

Yes many patients have both ME and FM, Im not at all disputing that. I even had FM myself for many years. What Im against is putting focus on any one of our symptoms over the res,, it can mislead people who dont know about our illness!!!

I have also felt very out of place in a ME/CFS and FM group, nothing worst with going to a support group and find out that no one has what oneself has (they actually asked, "who here has FM?" and about 14-25 or more people (the small room was half full) raised their hand.. and then "who has ME/CFS?".. and there was only me and I think there may of been one other (I cant remember now, I may of found I was alone). It was like the ME/CFS group had been taken over and the discussions I couldnt relate to at all due to them not being ME people!! You obviously yourself havent experienced something like this or you'd be more understanding towards how Im feeling about it.

The FM people handled the talk fine while I was slumping in my chair almost falling out and almost falling asleep during the talk. I felt soo very out of place) and my state compaired to the FM people, I found embarrassing (as I was so different).

Im not the only one who has gone throu this in a combined ME/CFS and FM support group, someone posted on a thread yesterday about how she too had an aweful experience like this in a rant thread and like myself, felt all alone there cause she was the only one there who had ME/CFS. There is nothing worst then feeling very isolated then going to a support group for your illnes while very sick so to have others like oneself to speak too but then no one there has your illness!!!! when its supposed to be a ME/CFS and FM group!!! So yeah, I do have a fear there when FM is put in name as I have seen how FM people as there are more of them out there, can end up overdominating completely a group.

So sorry if Im negative about that but I myself have good reason for it as I have been affected by when support groups put ME/CFS and FM into their titles due to this.

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!

Well it isnt a group of bird watches!! I appreciate all the group you are talking about has done... but it isnt a well known leading group now. (its not known outside our communities and many of this community wouldnt have known who they were.. they do not advertise their group well, If I polled even here, do you know who National ME/FM Action Network is and what they have done for us.. what percent here would know without reading this thread?). As I said, I'd forgot who they were. The CCC was done a long time ago now. That isnt to say at all I dont appreciate them doing that, for I do.

Im just big on that to move forward ME has to be focused on (I'd like all the groups to put just ME in their names rather then water down what ME is by other things whether FM or Fatigue", so sorry if you dont understand this. One cant say we've had much progression with the things being how they are now!!. I cant even get the care support Im needing due to us still being in like the dark ages over this illness!!! So please do not tell me that enough is already being done!!

Do you often not even get to eat due to this illness and being too sick to get food? is an ambulance having to be regularly called for you as you've got so weak you cant get a drink or even sit up?? NOT ENOUGH IS BEING DONE!! People like myself are at risk of death. Im not going to knock people wanting to do more and start a group. You can be content if you wish at the current situation, but my life is at risk.

The only way to get groups to change their names is to not support them much if they carry names one doesnt agree on even if they are doing good things (I never said this group isnt), or otherwise things wont change! I do not wish for things to continue on how they have been, hence I myself do want change!

I'd leave PR due to its name if there was a good friendly ME site out there. I got to do what I believe will help our situation and having other illnesses lumped in with ME has shown it doesnt!!! (All those with ME wouldnt be in the current horrid situation around it otherwise) I feel quite strongly about this. Obviously you and I think quite differently about things. Im not singling your group out for an attack.. Im just sticking to my beliefs and what I see as being a big cause of us not being taken seriously (the watering down of ME in various ways be it by having our groups full of others with different illnesses or whatever).

I do not understand why you are so against a new group which should be helpful to other groups out there. I guess we both will have to agree to disagree.

 

[barbc56]

Do we even know how to differentiate among me/cfs/fm? Until we do or until we know does that mean it's rather a moot point which makes things even more confusing or just the opposite?

Not to dismiss this issue and maybe it's a matter of semantics but one negative is that it seems to lend itself to my dd is worse than yours when we don't even know what each means. It seems the CCC attempts to do this but does it differentiate among ME, CFS, FM, Lyme, post viral immune sickness and any other conditions thrown into the mix?

It's one of those issues where you can see the validity to all sides yet any one side by itself doesn't seem sufficient to explain things.

I went to a local spport group several years ago and there were far more who thought they had CFS as it was called at the time than FM and many of these who said they had CFS really only had chronic fatigue.

It would be interesting to know if this was a result of the times, a regional result or just happenstance. I would think the exclusion of ME was a reflection of medical practice in the states.

If only there was a simple answer but then whatever the hell we have isn't simple either to us or the medical community.

Barb

 

[Little Bluestem]

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.

Whenever I see that someone has started a new organization concerning a subject that already has a large number of organizations, I always wonder why they didn't add their effort to an already existing group.

 

[Firestormm]

It isn't clear to me - from the little that has been said publicly - what this new venture is actually all about.

From the Facebook page of Jen Brea it would seem they are not an advocacy group (or don't intend to be):

"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

So I dunno. I guess we'll hear more when they have been better able to sort it all out.

I wonder how the Canary documentary film is coming along. From that acorn many saplings seem to be growing.

 

[Sasha]

It isn't clear to me - from the little that has been said publicly - what this new venture is actually all about.

It sounds to me as though they're not intending to be an advocacy group - that is, they won't be initiating advocacy actions of their own - but want to provide an infrastructure for people who are doing those actions.

One big thing that we've been lacking in our community is a high-profile, easy-to-join, well-curated mass-mailout email list or single, focal FB page with which any particular advocacy campaign can reach large numbers of PWME and supporters. We've got lots of separate enterprises - PR, Co-cure, Prohealth, Health Rising, lots of blogs, individual advocates like Bob Miller with their own supporters - but no single, mass network. We desperately, desperately need one. Infrastructure is exactly what we need. I'm very excited to see this being set up.

We have huge numbers of PWME but we've only just begun to wake up to our power in numbers and we need to be exploiting the internet and social media to start exercising our power and influence.

Can't wait!

 

[Aileen]

One big thing that we've been lacking in our community is a high-profile, easy-to-join, well-curated mass-mailout email list or single, focal FB page with which any particular advocacy campaign can reach large numbers of PWME and supporters. We've got lots of separate enterprises - PR, Co-cure, Prohealth, Health Rising, lots of blogs, individual advocates like Bob Miller with their own supporters - but no single, mass network. We desperately, desperately need one. Infrastructure is exactly what we need. I'm very excited to see this being set up.

Can't wait!

Well, I hate to burst your bubble, but I wouldn't get too excited. While I agree wholeheartedly with what you have said, the problem is that people, and even established organizations, won't join.

Some of us have been trying for years to get something like this going. There was a very large mailing list years ago, I was a member, but even getting people who were on the list to take action on something was nearly impossible.

To site a current example, there is a fundraising group on Facebook. I belong to it, although because of a downturn in my health, I haven't been keeping up very well. This group has been trying, begging, people to join. Google this site, the info is here. And on every other group they know of.

When a large fundraising opportunity, say for a chance to win $25,000 or even $100,000 comes up, we have contacted every ME/CFS, FM, MCS etc group we can find and get very little co-operation. Most don't even bother to return an email. They reach out to people on all the groups like PR; the result: miniscule.

Some members hit the Facebook pages of all these groups, bloggers etc. to the point where one member was suspended from Facebook!! Did the same with Twitter and all the other similar sites. Success? No.

We want an email list like you are describing. We have tried. People will not co-operate. Even when we ask "please tell us what we are doing wrong, why don't you want to join?" , most people will not even answer!

Some of the answers I have gotten from people are bizarre. For example, "I don't want to be reminded I'm sick" ?!?! You'd be surprised how many times I've heard variations on that theme. And, "I want to spend my energy on other things". These people will spend hours talking about hobbies or their pets on social media, but will not take 2 minutes to vote. Then whine and cry because they can't get the care they need.

The sad fact seems to be that the majority want someone else to do the work for them. It's just like most groups: 5% of the members do 95% of the work.

 

[Sasha]

I understand your frustration, @Aileen. I've also been involved in trying to get an email-base off the ground (in the end, the key players became too sick to take it forward) and all through 2013 I wrote fundraising pieces for PR, especially about the online voting contests, asking people to donate or vote, while being well aware that many people wouldn't act.

I also understand people not wanting to be reminded that they're ill. Of course, we all know we're ill but it's possible to escape for some (or even much) of the time by focusing on other things. And I can understand people wanting to spend time talking about their hobbies and pets - one of the great losses for many PWME is the loss of normal social contact.

But I think that things are much more hopeful than you're suggesting. Over the past very few years, the fundraising Facebook team in particular have been responsible for getting the word out more and more and the last time I checked the figures, we'd collectively raised something like $500,000 through online contests. Through crowdfunding, we've raised something like $1,000,000. Our networks are expanding and there are projects that are really grabbing people's attention and giving them hope: I'm thinking of the documentary projects especially.

I see this as all very positive. I think it's something that's building and building. And success breeds success - I can see a lot of people joining in if this initiative is presented in an attractive way. I think that having Jen Brea as part of it could be a massive plus. She's smart, engaging, personable and despite spectacular health limitations, she's clearly fantastic at getting things done and at networking.

Anyway, I guess we'll have to wait and see but I'm optimistic.

 

[*GG*]

It sounds to me as though they're not intending to be an advocacy group - that is, they won't be initiating advocacy actions of their own - but want to provide an infrastructure for people who are doing those actions.

One big thing that we've been lacking in our community is a high-profile, easy-to-join, well-curated mass-mailout email list or single, focal FB page with which any particular advocacy campaign can reach large numbers of PWME and supporters. We've got lots of separate enterprises - PR, Co-cure, Prohealth, Health Rising, lots of blogs, individual advocates like Bob Miller with their own supporters - but no single, mass network. We desperately, desperately need one. Infrastructure is exactly what we need. I'm very excited to see this being set up.

We have huge numbers of PWME but we've only just begun to wake up to our power in numbers and we need to be exploiting the internet and social media to start exercising our power and influence.

Can't wait!

This is my take on what I have seen written on Facebook also

I think as the internet has become more a part of peoples everyday lives (younger generation), it will be a useful tool to get people to just click here once or day or less to support a contest etc which will give us money, which can give us more visibility which could give us more funding and power?

GG

 

[caledonia]

Don't forget about ME Advocacy.org. We've only been around a few months, but we have over 400 members and a social media reach of around 4000. We try to keep track of what's going on with various advocates and then support their campaigns.

For example, Jen Spotilla and Mary Dimmock want people to write to Francis Collins to stop the P2P. We created a One Click version of that letter so that people can more easily participate. We have an ME Bloggers Feed where you can read all of the ME Blogs in one place, links to the Avaaz petition to stop the IOM, send out press releases to several targeted journalists and so on.

It would be nice if the various advocates would think of us first when it comes to creating campaigns, but we're not there yet.

 

[Aileen]

Don't forget about ME Advocacy.org. We've only been around a few months, but we have over 400 members and a social media reach of around 4000. We try to keep track of what's going on with various advocates and then support their campaigns.

It would be nice if the various advocates would think of us first when it comes to creating campaigns, but we're not there yet.

@caledonia This sounds good but this is the first time I have heard of this group. I hope you have reached out to the fundraising group that is on Facebook. You should be working together.

 

[caledonia]

@caledonia This sounds good but this is the first time I have heard of this group. I hope you have reached out to the fundraising group that is on Facebook. You should be working together.

Good to know. I haven't really developed relationships with other groups yet, but it sounds like that would be one to talk to, and just don't bother the rest as they don't respond anyway? Like everyone else, I only have so much energy.

I've had good luck with going to message boards - Phoenix Rising, Prohealth and MECFS Forums.