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37 Reviews
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June 27, 2012
1 person found this review helpful

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June 27, 2012
1 person found this review helpful

The CFIDS Association of America's research program is extremely important to the entire ME/CFS community. I also really appreciate their webinars, for example there is one on post-exertional relapse in July.

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Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

June 25, 2012
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June 25, 2012
1 person found this review helpful

When I was diagnosed with CFS eleven years ago, I researched where to turn for hope and help, and I found the CFIDS Association of America to be one of the most important places to turn to (the nonprofit Phoenix Rising is another). I had quickly realized that awareness of ME/CFS in the medical community is low and that ME/CFS research is hugely underfunded - and that until reasonable funding is directed towards biomedical research, I will remain severely ill and isolated from life. I needed to turn to people and organizations who could make things change. We need a dedicated and tireless effort to foster biomedical research, and right now it's up to us patients and our nonprofits. Without actors in the field like the CAA and Phoenix Rising I don't know where I'd be.

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Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

June 25, 2012
1 person found this review helpful

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June 25, 2012
1 person found this review helpful

For me, as an ME/CFS patient, the CFIDS Association of America represents hope. In the ME/CFS community, we have very little to feel hopeful about. The public institutes are spending pocket money on ME/CFS research and are doing very little in the area of education and awareness (sometimes rather messing things up than clearing them up). While we need to keep advocating for change in the public bodies, at this point in time we need to rely on other actors such as the CAA. In the past decade I have seen the CAA fund some of the most important biomedical ME/CFS research, such as the Stevens Protocol of exercise testing for ME/CFS and the research on gene expressions after exercise (Alan Light and Kathleen Light). Many of the projects they fund go on to recieve - the very hard to come by - public funding. I think the CAA is helping us move forward in a really difficult terrain.

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Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

May 17, 2012
1 person found this review helpful

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May 17, 2012
1 person found this review helpful

The CFIDS Association of America (CAA) is, without a doubt, the leading advocate for ME/CFS research in the world, and the folks who work for the Association work tirelessly at fighting for patients, campaigning for research projects, and providing helpful treatment and management tips for patients. It is the longest-serving advocacy group for CFS patients, and its track record is undeniable. The Association's leadership is unmatched, and I challenge anyone who disagrees to try to build the rock-solid foundation upon which the CAA stands. The Association has been successful in funding important and dynamic research projects which will undoubtedly lead someday to a complete public understanding of CFS and at least a reliable treatment plan. Its commitment to research is one of its best qualities, and the CAA has done very well to reach out to some of the best medical and scientific minds working on the ME/CFS case. It is also a poverty that so many reviewers feel that they have been brushed aside by the Association. They are the leading advocate for CFS patients, and the CEO works 50-60 hour weeks to make sure progress is made on all fronts in the fight against CFS. With countless newsletters and sources of information for those who are interested in or suffering from CFS, the CAA has done an outstanding job of keeping its supporters filled in on where donations are going and informing them about what the medical community is saying about the disease. It is understandable that so many people are upset that their lives have been turned upside-down by ME/CFS, but with the Association’s mission to use science and research as the main weapons against the disease, there will be progress. Libels and slanders against the Association does nothing except weaken the cause for which the CAA fights, and it’s the same cause that everyone who has experienced the quiet destruction of chronic fatigue fights for: eliminating CFS.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

April 19, 2011

My affiliation with The CFIDS Association of America began shortly after my diagnosis with CFS in 2005, when I quickly realized that they were, and continue to, be the largest and most active charitable organization dedicated to chronic fatigue syndrome (CFS). Since 1987, the Association has invested more than $29.5 million in initiatives to make CFS widely understood, diagnosable, curable and preventable. Over the past 6 years I've have made The CFIDS Association of America my charity of choice, as well as my source for accurate, up-to-date reporting of scientific data on CFS.

I strongly believe that their focus on research will most efficiently help us all reach our collective end goal; to understand the cause of this illness, and develop safe, affordable treatments and preventatives.

The Great!

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

the form of published research findings focusing on identifying biomarkers for CFS, generated by grants from The CFIDS Association of America.

Ways to make it better...

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

Provide them with greater resources and funding to augment their efforts to support patients with CFS through their focus on solid research, which will provide an accelerated approach to developing an advanced objective diagnosis, and effective treatment for CFS.

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.

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