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
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