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: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

I am extremely grateful for SMCI and the work they are doing to help solve the heartwrenching disease called CFS. My daughter has suffered for over 6 years with CFS. Knowing that excellent, trustworthy research is being funded and supported by SMCI gives us hope that a treatment will be found. This organization is doing essential work for ME/CFS sufferers around the world.

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Rating: 5 stars  

The researchers this organization funds are world class. I have seen several of them present their findings and the progress they are making is very exciting. The leadership is tireless and focused yet willing to pursue any approach that will cure this disease.

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Review from Guidestar
Rating: 5 stars  

This is an excellent, well-run organization, with fine leadership. Its mission to support much needed research for this misunderstood condition deserves support.

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Rating: 5 stars  

The CFIDS Association of America has provided me with invaluable information over the years. Without the guidance of the research done, the research collected and the reasearch shared we would have been like a ship without a rudder.

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

Give them more grant money for more research.

When was your last experience with this nonprofit?

2014

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Review from Guidestar
Role: General Member of the Public
Rating: 5 stars  

I have a very close friend who has depended on your organization for years. She has often told me how helpful it has been for information and support. Struggling with this illness is stressful and sadly, often unrelenting.

I am hopeful that the work you do will continue.

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Review from Guidestar
Rating: 5 stars  

1 person found this review helpful


CFIDS is a huge problem that needs our attention , affects many and ruins lives. This org. Does the necessary work that no one else is doing. Smart dedicated people trying to efficiently solve big problems. I am pleased to give review and make donations when I can.

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Review from Guidestar
Rating: 5 stars  

1 person found this review helpful

Shortly after I was diagnosed with ME/CFS I discovered this organization and frankly it saved my sanity. I had no idea what the illness was and neither my doctor not I knew how to treat it. The organization gave me information and support and the knowledge I was not alone . Just the stories of others and their experiences with the illness gave me confidence. It also serves as a repository for research information but does an excellent job of screening studies for quality and is careful not to
jump on the latest bandwagon.
Over the years the organization has varied its focus , at the urging of patients, from expanding public awareness of the illness to serving as a catalyst for research. Its efforts have enabled researchers to collect pilot data that could then serve as the basis of successful large scale grant requests. I am now a simple member and donor to the organization but have previously served on the Board and used my research skills to review applications for pilot study funds. I have watched as the organization created a Biobank data set of persons diagnosed with CFS and controls to enable researchers to have access to a credible pool of persons willing to participate in research. This dramatically shortens the time needed for studies and ensures quality in the population studied. In return the Association retains access to the research results. It is one of the most creative research structures I have ever seen and promises to dramatically speed up progress. I know my funds donated are well spent and can see the results in Webinars held by the researchers during the year to summarize their findings.

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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
Rating: 5 stars  

1 person found this review helpful

Our family knows firsthand the debilitation of CFIDS, now better known as ME/CFS, as both my husband and oldest daughter suffered from it for years and still battle lingering effects and occasional relapses. Too little is known about the disease and especially about ways to cure people so we have been deeply impressed by the decision to devote far more attention to research and less to patient advocacy. Of particular interest is the idea of a research institute without walls, that is, funding focused, useful research at different institutions under the coordination of a scientific director. This approach seems excellent value for money and offers the promise that research by different scientists in different locations can be tapped to finally provide insights into solving and curing people of this debilitating disease.

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Review from Guidestar