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Is it time for a US national ME/CFS organization?

Discussion in 'Action Alerts and Advocacy' started by leelaplay, Feb 24, 2011.

  1. leelaplay

    leelaplay member

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    Is it time for a US national ME/CFS organization?


    This is completely presumptuous of me as I am a Canadian. But I am wondering if it may be time for Americans to look at developing a national ME/CFS organization.

    My understanding of the normal structure of patient groups is that there are 2 or 3 tiers. A national group that is comprised of state groups, which is in turn perhaps comprised of smaller area groups. No such thing exists right now.

    There are a few “national” groups that have members, the CAA being the one that many government and media groups turn to as representative of patients as a default.

    There are many good state or local groups – Wisconsin, Vermont, NJ. And there are independent groups like PANDORA and OFFER. And independent advocates like Hillary Johnson, Mary Sweitzer, Khaly Castle, Heidi Dunlap Bauer, Andrea Whittemore-Goad...And the forums and patient groups. In fact, there are so many of all of these, I have to ask forgiveness for all of those that I didn't mention directly by name.

    Maybe this is the time for us all to get together and see about setting up a national group that can speak on our behalf. A group that we trust. A group that is elected by us. A group that works for our best interests.


    How would this be achieved? We would need people to indicate an interest. We would need a location to meet.


    One approach then might be to start painting/brainstorming what that organization would look like:

    - Values

    - Mission/vision statement

    - Strategic priorities

    - Measures of success

    - What it would NOT do, as well as what it would do

    And to examine other existing models for ideas on most effective composition, voting mechanisms, communication strategies, funding.....

    The name itself will be somewhat contentious, but I view it as an issue that can be dealt with once the organization is forming. Possible names could be suggested, time set for all to argue their positions, then a vote to decide.


    Next of course, would be the international group. lp


    by XMRV Global Action on Thursday, February 24, 2011 at 12:33pm
    http://www.facebook.com/pages/XMRV-...national-mecfs-organization/10150110481521797
     
  2. justinreilly

    justinreilly Senior Member

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    I think there is a need for at least another group to represent patients and advocate. We are talking about starting a new group and moving very slowly on it over on a thread on mecfsforums.org:

    http://www.mecfsforums.com/index.php/topic,5704.0.html

    There will probably be a loose agreement on goals and work started on a website as first steps. I encourage everyone to come over and join that discussion and help out. i am not going to post a thread on it here because it would not be possible to integrate the planning from two separate threads.

    it has apparently been suggested to CAA a lot that they coordinate with the state groups as this seems to be an effective way to do things in other diseases but they don't want to do that. i assume you are talking about a national org that would coordinate with the existing state groups.

    there isn't going to be another group to pop up that is as structured, funded and organized as PANDORA and CAA unless WPI starts one which WPI has said it would like to. I really really really hope they do! the one on the other forum i expect will go slowly in fits and starts and may be contentious to a certain extent. we have to see how it goes.

    PANDORA seems to have coordinated with state groups at least a little. PANDORA is definitely more collaborative minded than CAA. Perhaps they will be this national org you are thinking of to work with locals. regardless i think there needs to be another, more appropriately aggressive voice than PANDORA's is currently.
     
  3. eric_s

    eric_s Senior Member

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    I think you need a strong, membership based national group, especially since the CAA is no longer membership based (did they get this wrong in the Facebook post?). Maybe that's good for them, for the goals they want to achieve, but i think there are many things where you need members.

    Maybe the state orgs should found an umbrella organisation. So they would still exist as organisations on their own, but it would be possible to do more large scale operations. I think the more members you have, the more you will be listened to.
     
  4. alex3619

    alex3619 Senior Member

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    H, for a truly representative patient advocacy organization, it has to be membership based. I agree with that, eric_s, its a basic democratic principle. I am not sure the WPI is the right choice though, it might divert some attention away from the medical goals. An organization that is affiliated with the WPI, on the other hand, might be a go.

    A state based umbrella organization would also be a way to go - grass roots is often very good. However, dare we think bigger? Why not a global organization? What would be the advantages? What would be the impediments? The same goals being worked on in every inhabited continent would send an even bigger message.

    Bye, Alex

    PS On a note of humour, a continent based structure would be amusing - Australia being the only nation that is also a continent.
     
  5. Xandoff

    Xandoff Michael

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    Is it time for a US national ME/CFS organization?

    I like your idea Shrewsbury. Your post re-kindled an old idea of mine. I think we have enough people and organizations pulling in different directions. I think ( I will use the Royal WE) "WE" should find a Big AMERICAN AD AGENCY in the good old USA and ask them to create solid practical Public Service Announcements for Televison that can be aired for free. We need to bring this American Story to America. The American people alway's root for the under-dog. Simple and plain public service announcements appealing to the good hearts of Americans. Whatever Ad Agency we get for the Pro-Bono work would receive prestigous Awards and recognition for thier work. What say you?
     
  6. Mya Symons

    Mya Symons Mya Symons

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    The Association of Overlooked Retroviruses

    Since the people who are XMRV positve are not being adequately represented by the CAA, wouldn't it be better for them to start an XMRV association? In that way, you would be more likely to get away from the name Chronic Fatigue Syndrome. Maybe HTLV-1 and 2 could be included since many people do not know there is more than one retro virus?
     
  7. eric_s

    eric_s Senior Member

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    Agree, Alex and Xandoff. Please try to help make sure those ideas will not get lost again. It can happen in a forum...
    Certainly some people here on PR are connected to a state org and might talk to them about that.

    A global organisation would be great. Maybe more of a "Global ME/CFS Forum" where the different organisations meet, talk and coordinate. For a true organisation, the geographical and cultural differences might be too big. But i don't know.
    In Europe there is already the EMEA (European ME Alliance) that unites a good number of national organisations. I think it's a very good and necessary approach. I don't know if they are very active already though, they seem to be pretty new (2 years old or so).

    I also think the WPI should try to not get too much into advocacy. Wouldn't it be better for them to remain scientific, objective etc.? I don't think you can stay neutral if you engage in advocacy and losing this might make them a more easy target and cost them credibility. But i might be totally wrong.

    Xandoff, i think MCWPA are working on such an anouncement, so you might want to get in touch with them.
     
  8. justinreilly

    justinreilly Senior Member

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    I myself want to focus on an ME org for my efforts. However, one of the members on the thread on mecfsforums made a very good case for a XMRV/HGRVs org. So I think that might be a good idea too. I encourage everyone to go over there and join that discussion.

    A retrovirus org might be better than an XMRV org. I really want to see some work done on DeFreitas RV ASAP. It seems to me that HTLVs are a bit understudied and we may learn from it.

    http://www.mecfsforums.com/index.php/topic,5704.0.html
     
  9. justinreilly

    justinreilly Senior Member

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    That sounds like a great idea to me!
     
  10. justinreilly

    justinreilly Senior Member

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    This is a very good idea. I think this is a project that we need an org to handle. It's tough to get organized enough to do this just talking on a thread. Otis is working on making a website, meactingup, that might serve as a platform for one-off projects such as this, though. It may take a while for him to fully set this up.

    MCWPA.com has a similar PSA idea on their list. I would contact them and see if you can work together. We all need as many hands as possible.
     
  11. justinreilly

    justinreilly Senior Member

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    I don't think they would do a straight up WPI-advocacy division. It would have to be Annette coordinating it, putting money into it and hiring a good leader (like she did with Dr. Mikovits). Then join it and detach a bit from WPI or vice versa. There is a big negative, i agree with perceived 'conflicts' between the science and advocacy.

    But think of what Annette could do in advocacy! WPI is kicking ass in the science. Imagine a Whittemore lead advocacy agency rolling in to DC and taking care of business! I get goosebumps just thinking about it.
     
  12. Cort

    Cort Phoenix Rising Founder

    I think the idea of groups forming an organization or Coalition to work together is a great idea. Its definitely in play and I think its going to happen. I think alot of groups are getting the message that we really have to band together.

    I would love to participate in that thread on the ME/CFS Forums but since they banned me I can't; obviously it's going to be difficult for Phoenix Rising to be part of something I can't discuss. If groups are going to work together they're going to have to forgive and forget and..... work together.
     
  13. eric_s

    eric_s Senior Member

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    Football (Soccer) is organized a bit similarily. There are the national associations, then continental ones, like UEFA in Europe and then there is FIFA (global).

    I hope in the USA they will pursue that idea of connecting the smaller orgs. I'm sure that would give us more possibilites, more leverage. And i hope i can work with EMEA in Europe later. In a couple of weeks i will have more time again and can do more.
     
  14. justinreilly

    justinreilly Senior Member

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    There isn't any thread on that on mecfsforums. There is one called "New Advocacy Org?" that is discussing starting a new org with a website, not forming an umbrella org over existing orgs.

    http://www.mecfsforums.com/index.php/topic,5704.0.html

    I would love to see the existing state and other orgs form an umbrella org. Obviously that's a discussion they have to have among themselves.
     
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Just to let you know

    Just to let you know, MCWPA has a new international team to take the actions here in US to have an impact internationally. Announcement coming soon. MCWPA has been approached by organizations in Japan, one in Canada and, gosh, don't remember the other country.

    Also, MCWPA is offering a video contest. Please see this: https://ui.constantcontact.com/rnavmap/evaluate.rnav/pidRUE2gqQiFT6GIC8dlrDv290

    Good way to raise money for your favorite charity and create awareness too.

    Already have two contestants. Want more.

    Tina
     

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