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April 11, 2011
2 people found this review helpful

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Review from Guidestar
April 11, 2011
2 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.

April 11, 2011
1 person found this review helpful

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Review from Guidestar
April 11, 2011
1 person found this review helpful

The CFIDS Association of America has been working against the interests of those it pretends to represent. Many patients now think we would be better off without them "advocating" for an illness that they obviously do not understand.

The Great!

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

the media articles and at conferences

Ways to make it better...

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

change leadership

April 10, 2011

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Review from Guidestar
April 10, 2011

The CAA has been a colossal failure to those of us who suffer from nuero immune illnesses. They fail to put the proper resources into the most promising areas needing to be researched. Their CEO, Kim Mcluess consistantly manages to set new lows except in her pay. This orginization needs to be disbanded.

The Great!

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

Every additional day I'm sick is a testimony to there inefficiency

Ways to make it better...

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

Burn it to the ground and start over

February 27, 2011

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Review from Guidestar
February 27, 2011

This charity purports to represent patients suffering from CFS/ME yet demonstrates time and time again that it is not up to the task. Their "advocacy" has been so poor one is tempted to come to the conclusion that they are actively working against patients' interests. Given the vast wage demands by those in charge this is, in my opinion, disgraceful.

The Great!

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

Being a sufferer their lack of advocacy affects me directly

Ways to make it better...

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

Force it to reveal who its major donors are, sack the director and scientific advisor and cut the wage drastically of the next director. We need someone who is there because they care, not because it is a way of earning a lot of money.

January 30, 2011
1 person found this review helpful

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January 30, 2011
1 person 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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