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38 Reviews
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April 11, 2011
4 people found this review helpful

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Review from Guidestar
April 11, 2011
4 people found this review helpful

The CAA has been underperforming and poorly representing patients as an advocacy and educational organization for many years. Much of the donated money goes towards paying an overinflated salary for the CEO at the expence of advocay and research initiatives. The CEO also is not well qualified eduactionally ( bachelors degree) to be leading this non-profit.
In summary it is a poorly functioning org which has no measurements in place for sucess and an overpaid CEO.

The Great!

I've personally experienced the results of this organization in...

Poor educartion of doctors and poorly targeted research.

Ways to make it better...

If I had to make changes to this organization, I would...

Hire a new CEO and research director.

January 30, 2011
2 people found this review helpful

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January 30, 2011
2 people found this review helpful

ME/CFIDS is a devastating neuro-immune disease. ME is a disease that desperately needs funding more than almost any other. Unfortunately CAA, one of the two largest ME orgs in the US, has failed patients and thus is not the org to which one should donate.



PLEASE DO DONATE TO
AN EFFECTIVE ME ORG! I strongly suggest the Whittemore Peterson Institute for Neuro-Immune Disease
wpinstitute.org
or PANDORA
pandoranet.info
both of which enjoy very strong support from patients.



CDC, NIH and the UK govt have waged a quarter century war on ME science and patients and CAA has done much too little to bring this to the public's, lawmakers', or even pwMEs' attention, thus indirectly contributing to our persecution.



CEO Kim McCleary receives exorbitant compensation.



There is heavy criticism of CAA by patients. For example, see comments to the following blog post on patient forum Phoenix Rising:
http://forums.aboutmecfs.org/content.php?348-CFIDS-Association-Interview-with-Jennifer-Spotila-cfs-me-cfs-phoenix-rising

The Great!

I've personally experienced the results of this organization in...

being persecuted like every other person with ME, which CAA has done much too little to oppose.

Ways to make it better...

If I had to make changes to this organization, I would...

make CAA advocate effectively for pwME

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