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38 Reviews
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June 14, 2012
1 person found this review helpful

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June 14, 2012
1 person found this review helpful

I have been ill with ME/CFS for 26 years. During that time, the CFIDS Association has always been there for me - first with information I needed to cope and now, doing innovative research and linking researchers. I am so impressed with how they have developed and so hopeful as a result of the current research approach. Thank you CFIDS Association!

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Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

June 7, 2012
1 person found this review helpful

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June 7, 2012
1 person found this review helpful

The CFIDS Association is the leading non-profit research group working on ME/CFS. It has funded more ME/CFS biomedical research than any entity besides the federal government. It's last round of grants secured a 7 to 1 return on donations in federal grant money. It has funded most major research groups and many of the breakthroughs in biomedical research on this illness. The staff has knowledge and experience, and is now leading the way in research innovation.

The Great!

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

seeing the results of their funded research. Understanding the rigor of their grant funding process.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

What specific problem, purpose, priority, or project prompted your gift?

I have ME/CFS.

What would you tell others about this organization?

It is the organization best positioned to have real impact on discovery of biomarkers and treatments.

November 12, 2012
1 person found this review helpful

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1 previous review
June 10, 2011

I have had CFS for 5 years and have went from working in excess of 40 hours per week when healthy, to part-time and last year to totally disabled. I have a lot of time to lie down and think each day... more

November 12, 2012
1 person found this review helpful

The CFIDS Association proactively encourages ME/CFS researchers with seed grant money. They are fill a niche for small researchers to prove their hypothoses and then to obtain much bigger grants from the NIH.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2012

June 10, 2011

I have had CFS for 5 years and have went from working in excess of 40 hours per week when healthy, to part-time and last year to totally disabled. I have a lot of time to lie down and think each day and I believe that my best chance of getting well is to support the CFIDS Association.

This organization has and continues to provide funds for innovative research projects that would likely not be done otherwise. One of the projects is even coming close to finding the first biomarkers for this disease!

Biomarkers would help doctors, for the first time, to recognize this illness in their patients. And biomarkers would justify more research grants, especially from the government. But mostly, this horrible illness will come a big step closer to being understood, treated, and possibly cured one day. I am betting my life on the CFIDS Association.

The Great!

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

I receive daily updates of all CFS research, have been alerted to actions in Washington DC, and have learned from educational Webinars.

Ways to make it better...

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

The only change that I would have made would be to concentrate efforts on just one area. And CFIDS Association has recently done exactly this by changing its focus to just research. I'm hoping our current knowledge will now take a huge leap forward this year and the next.

June 10, 2011

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June 10, 2011

cfids association is for me the best because they are doing great research and give objective information! They are a source off hope for me because I live in Belgium and here they force cfs patients to do exercise and follow cognitive behavior therapy to heal... I have CFS for 17 years now, am most off the time bedridden and can sit now a little bit in a wheelchear. My dearest father, the only person that was there for me all the years in my illness and who took care off me (bringing my meals at my bed, ...) died off cancer last year. Now there is nobody anymore...

The Great!

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

the greeving off my fathers death, the possibility to participate in the gene biobank, the hope that i find in their research, so many things

Ways to make it better...

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

give them more money to do more rechearch and bigger researchpopulations

April 24, 2011

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Review from Guidestar
April 24, 2011

The CFIDS Association of America has been making a difference in the lives of people with CFS for well over two decades. Through their efforts in educating patients, caregivers and health care professionals, their commitment to extensive national research initiatives, and the more recent establishment of a patient biobank, the Association has made a meaningful impact on CFS and has laid the foundation for future progress. I appreciate the commitment to good solid science in all aspects of carrying out their mission, and I'm optimistic that the Association will continue to play a primary role in solving CFS. The bulk of my charitable giving goes to this outstanding organization, and I'm confident that the CFIDS Association of America is making the most of my investment.

The Great!

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

The Association's commitment to research has made a genuine impact in furthering the understanding of CFS. I feel more hopeful as I watch the science move forward, and the possibility of a life and future without CFS no longer seems unrealistic to me.

Ways to make it better...

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

As funding becomes available, my hope is that the Association will continue to expand it's efforts in science and research initiatives.

April 12, 2011
2 people found this review helpful

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Review from Guidestar
April 12, 2011
2 people found this review helpful

The CFIDS Association of America (CAA) does not fight for the patients. The organization needs to make clear and consistent statements about:
(1) the harm that exercise can do to severe patients
(2) the need for an accurate case definition, such as the Canadian Consensus Criteria

(3) the harm the CAA and government policies are doing to children
(4) the quickly approaching government plan to reclassify CFS as a mental disorder
(5) the unqualified, inappropriately educated people the NIH and CDC use to award research grants, and
(6) the miniscule amount of money set aside by the government to study this sometimes life-threatening disease.

The Great!

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

Every time I interact with doctors, family and friends, I personally experience their disbelief. One thing that has added to this hurtful attitude over the years is the CAA's public willingness--demonstrated in their Continuing Medical Education course--to support exercise and cognitive behavioral therapy as treatments for the disease.

Ways to make it better...

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

If I had to make changes in this organization I would replace the CEO. The Board has given their CEO a hugely excessive salary, while giving a pittance to science research. I would also replace the Scientific Director, who has never apologized for her part in establishing the CDC’s adoption of the broad, sloppy, revised Fukuda definition and who publicly addresses patients in a condescending manner.

April 11, 2011
3 people found this review helpful

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Review from Guidestar
April 11, 2011
3 people 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

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