Worst ME ("CFS") Org- USA

[justinreilly]

What's the worst ME org in the USA?

Am I missing anyone?

I think this is important to ask. For example, if a large majority pick one org, then that org may want to see what the best orgs are doing in order to improve.

 

[insearchof]

Is it appropriate to classify the WPI as a ME or CFS org? Its really more of a resarch org. It does not advocate for patients or operate in the same way as other orgs listed. It may have an advocacy role, but I would think that it extends only to its own scientific research across a broad area of immuno neuro manifestations.

 

[justinreilly]

You're right it is different. It could go either way, I think, but I was just thinking of all orgs being compared not just research or advocacy. If you wanted to separate them out in a different poll that would make sense.

 

[justinreilly]

I forgot to add a few more choices. I've PM'd a mod to see if there's a way to add more choices to the poll.

 

[ixchelkali]

I guess I don't see what is to be gained by the competition except more divisiveness. Wouldn't it be more constructive to find ways to bring patients and their various organizations together? To find common ground on which we can speak with one voice? We have so many establishments and people trash-talking ME/CFS patients, I don't feel like adding to it.

 

[justinreilly]

I can certainly understand that. I don't intend to discuss my issues with one particular ME org here. I have had my say. I do think it's instructive to see the numbers of people who feel different ways, in addition to all the perhaps more qualitative expression of it (people posting on the forum). I think it gives a different and important perspective, perhaps more democratic with each person having one vote. And you get the view of more people than the posters on a thread on the same subject.

 

[justinreilly]

Polls apparently can't be edited. I think we've got the major orgs up in this one. I would consider PR major, but, as SpecialK82 said on another thread, it may be like comparing apples to oranges. I did edit a similar poll on mecfsforums.com to include all the suggestions. So far the added orgs haven't gotten any votes.

http://www.mecfsforums.com/index.php/topic,6742.0.html

If someone wants to vote on one of the unincluded orgs, pls vote on mecfsforums.com and/or start a new poll here with all the choices. Want everyone to be heard. Thks.