Andrew
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I'd like to contact IOM (or anyone else can do it) and show them the annoucement where CAA said they are no longer a patient group. Does anyone have a link to that announcement.
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Gadzooks. My thread title is not very polite. Sorry about that. Guess I'm more flustered than usual. I've got to calm down.
I don't know if it is my English but what does this mean for us??? They are dissolving the group or what???I'd like to contact IOM (or anyone else can do it) and show them the annoucement where CAA said they are no longer a patient group. Does anyone have a link to that announcement.
I don't know if it is my English but what does this mean for us??? They are dissolving the group or what???
For anyone who does not already know:
Patients got fed up with CAA accepting money from the CDC in exchange for promoting CDC's biased and harmful treatment information. http://www.change.org/petitions/pet...ion-of-america-as-our-advocacy-representative
The CAA realized they had to talk their way around this so they responded with this:
http://www.cfids.org/cfidslink/2011/ftdo-march.asp
The Association had already terminated the CDC contracts prior to the petition. The decision not to compete for the physician education money from CDC was made in 2008. And that decision was made because the Association did not want to support the CDC's increasingly psychogenic flavor to the program. I was on the Association's Board at the time.
We are transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research. Advocacy is still a critical component of our research program, but it will be done more strategically. We will share our content expertise with policy makers and public health officials. We will partner with public, private and commercial funders to expand investment, spur innovation and apply existing knowledge to develop better diagnostics and therapies.
We are transforming from a patient support and advocacy organization to one laser-focused on stimulating and supporting research. Advocacy is still a critical component of our research program, but it will be done more strategically. We will share our content expertise with policy makers and public health officials. We will partner with public, private and commercial funders to expand investment, spur innovation and apply existing knowledge to develop better diagnostics and therapies.
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Gadzooks. My thread title is not very polite. Sorry about that. Guess I'm more flustered than usual. I've got to calm down.