I Need information about CAA right now

[Andrew]

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.

 

[Andrew]

Gadzooks. My thread title is not very polite. Sorry about that. Guess I'm more flustered than usual. I've got to calm down.

 

[taniaaust1]

Gadzooks. My thread title is not very polite. Sorry about that. Guess I'm more flustered than usual. I've got to calm down.

lol.. Ive been like that too today (thou not here).

 

[Nielk]

http://www.mecfsforums.com/index.php/topic,18890.msg157986.html#new

 

[Seven7]

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???

 

[caledonia]

I don't know if it is my English but what does this mean for us??? They are dissolving the group or what???

No that was a couple years ago. Yet despite what they said, they are once again acting like a patient group. Two-faced traitors.

 

[Andrew]

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

 

[jspotila]

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.

 

[Andrew]

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.

It would be nice if they put the same level of energy into publicly denouncing the CDC information as they did when they were publicly promoting the CDC website and Oxford Criteria studies. The difference in levels of publicity leaves a feeling that they have not really changed, and they are simply playing a different angle now.

 

[Nielk]

In March of 2011, the CAA stated the following:

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.

This is a pretty clear message that they have become an organization focused on research for CFS.
This is fine as they have a right to choose their philosophy and focus but, don't confuse the patient community. Don't act as a representative of the patient community...because you are not. There is no paid membership to the CAA any longer. They are basically no different than any other organization doing research into CFS like the OMI or Whittmore Peterson Institute. Patients do not expect those other organization to speak the voice of the patients. I think that it is time for the CAA to acknowledge their limitations and the fact that they do not speak or represent the patient community any longer.

 

[Nielk]

Why has the CAA been invited to speak at the IOM meeting Jan 27th as a patient representative?....when they clearly are not.

Have the following organizations been invited?

Simmaron Research
Whittmore Peterson Institute
Open Medicine Institute
The Mt. Simai ME/CFS Center
Nova Southeastern University CF Center
Hunter-Hopkins Center
The Fatigue Consultation Clinin- Utah

 

[RustyJ]

Advocacy was relegated as secondary to research in this missive from the CAA. More importantly, the article clearly outlines the new 'research first' direction for the CAA.

Clearly there is potential conflict between the two roles of advocacy and research, since advocacy is goal oriented towards putting patients first, and research is subject to funding contraints, ie chase the dollars to survive.

Source:

From the CEO's Desk PUTTING RESEARCH FIRST

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.

[more]

 

[Andrew]

I thought of a way to do this without being so negative. I will point out that CAA is a research group and that they should invite the other known research groups. I'll include the list Nielk posted.

 

[Izola]

Gadzooks. My thread title is not very polite. Sorry about that. Guess I'm more flustered than usual. I've got to calm down.

Andrew: I love the way you titled your thread, true, action evoking, and to the point. Iz