The CFIDS Association of America, Inc.

Rating: 4.09 stars   80 reviews

Issues: Health

Location: PO Box 220398 Charlotte NC 28222 USA

Mission: CFIDS is a serious and complex illness that affects over one million U.S. adults, more than multiple sclerosis (MS), AIDS or lung cancer. The illness is characterized by incapacitating fatigue, problems with information processing and memory, flu-like symptoms, pain in the joints and muscles, dizziness, nausea, sleep disorders, severe headache and numerous other symptoms. Our mission: For CFS to be widely understood, diagnosable, curable and preventable.
Results: Since 1987, the Association has invested more than $30 million in programs to end the pain, disability and suffering caused by CFS.
Programs: The Association is proud to lead national efforts in CFIDS awareness and education, public policy and research and we are grateful to those who support our work. The CFIDS Association offers information and resources to patients, family members, caregivers, support groups, media professionals the general public and health care professionals. The Association focuses its resources on research, policy and communications that will advance understanding, diagnosis, treatment and prevention of CFS. We are grateful to all those who support our vital work.
2014 Top-Rated Nonprofit
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EIN 56-1683450
704-365-2343
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Community Reviews

Role: Professional with expertise in this field
Rating: 5 stars  

After coming down with CFS two years ago, finding the web site for CFIDS Association of America (now Solve ME/CFS Initiative) was a godsend. It has been the best clearing house of reliable information. The organization continuously posts abstracts of recently published research articles. It raises money to provide seed money for new research initiatives, many of which have gone on to land more substantial grants from government funding agencies. This fall, some of these funded researchers have been giving webinars on their work, webinars organized by the Solve ME/CFS Initiative. The non-profit maintains a "Biobank" of frozen blood and cells from CFS sufferers as well as controls that researchers can apply to use, simplifying their search for samples for their research. It also keeps us informed of relevant conferences and meetings held by the FDA and the IOM so that we can tune in via the web. As a PhD in biology with years of research and teaching under my belt, I greatly appreciate what this organization does, value the quality of information it provides, and hope that its interaction with government agencies results in increased funding for research on this mysterious and debilitating syndrome. I, as well as members of my extended family, eagerly donate to help their efforts.

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Review from Guidestar
Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

Solve ME/CFS Initiative is an important leader in the effort to find the cause of ME/CFS while simulataneously trying to make it easier to live with this serious disease. They lead with choosing and funding research projects, lobbying our government health agencies to support interest in and research of ME/CFS and educate patients and health care providers. They also started a BioBank of appropriate blood samples from patients which researchers use.

Solve ME/CFS Initiative is pursuing exciting ideas to help people with ME/CFS.

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Review from Guidestar
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Role: Professional with expertise in this field
Rating: 1 stars  

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.

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

Poor educartion of doctors and poorly targeted research.

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

Hire a new CEO and research director.

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Review from Guidestar
Rating: 1 stars  

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

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.

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

make CAA advocate effectively for pwME

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