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PLEASE SIGN: The Petition to Disassociate from the CAA As Our Advocacy Rep

leaves

leaves

Senior Member
Messages
1,193
Although im for disassociating from the caa, I won't sign the petition. I agree with Andrew that this petition may do more harm than good, we should really try to specify an alternative organization.
 
Hope123

Hope123

Senior Member
Messages
1,266
IMO, neither CFS Central nor WPI are good choices -- I'm thinking more of the MCWPA (I have no affiliation with them other than as an interested patient atm).

Mindy K. is a journalist and although she has written some good pieces (which she labelled as editorials) , she might prefer to keep a neutral stance overall besides which it takes more than one person to be an effective patient advocacy org.

The WPI, despite its occasional wadings into advocacy, is also inappropriate because it is primarily a research org and I would like it to stay that way. Funding agencies might not think that an institute which also advocates will be objective enough when it comes to the science. OTOH, if WPI wants to establish an advocacy arm separate from the research arm, this might be possible although I still don't know how they would be viewed. I also want them to concentrate on the research rather than advocacy.
 
Dreambirdie

Dreambirdie

work in progress
Messages
5,569
Location
N. California
WPI has a press room and a media coordinator. http://www.wpinstitute.org/news/news_cmmpress.html
They could easily step up to the plate to do some advocacy, when necessary.

And Mindy is hardly neutral... which in this situation, is a good thing.

I'm also fine with MCWPA. It's good to have a bunch of options to consider, when bringing these issues to the media and responding to what they put out.
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
fwiw, i don't think it would cause us problems to say we don't like CAA. If we don't turn up the pressure and redirect attention with one of the few ways we can they are just going to keep going on like they have been for the last 20 years.

It's definitely good to recommend someone else to speak. I think MCWPA, WPI, Mindy and Hillary are great choices.
 
leaves

leaves

Senior Member
Messages
1,193
I think it would be great if Mindy could be the spokesperson of a new me organization
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think getting a research org eg WPI messed up with advocacy (even if they were willing) would end up making any future research coming out of them.. be seen not as strongly by the over all research community. Everyone (non CFS/ME community will be screaming bias research instead of taking things seriously.

I really hope WPI stays focused on the very important research!
 
Dreambirdie

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I have passed the petition along (through a source back east) to the Massachusetts CFIDS/ME FM Association, and to Rik Carlson, of the Vermont CFIDS Association.

Please keep the signatures coming!
 
M

mezombie

Senior Member
Messages
324
Location
East Coast city, USA
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