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June 10, 2011

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June 10, 2011

For over two decades, The CFIDS Association of America has led the way in public policy, research, and education to advance the cause of over one million Americans suffering with CFIDS (also know as ME/CFS). They have worked diligently to educate the public, the health care community, legislators and other public officials about the debilitating nature of this illness and urged increased congressional funding for research. In the late 1990’s, this nonprofit worked closely with the Social Security Administration, which resulted in a ruling making it easier for disabled CFIDS patients to get federal disability. During that same time period, they also played a key role in uncovering the diversion of CFIDS funds to other health issues at the Centers for Disease Control. A federal investigation resulted in a restoration of $12.9 million to CFIDS research. The CFIDS Association has funded millions of dollars of research. Some of their research projects have been picked up by the National Institutes of Health and fully funded. The organization’s current focus is research. They are working to find cause(s), diagnostic biomarkers, treatments, and hopefully a cure. Promising studies are selected based on strict scientific criteria. Their research efforts have an impact for the 17 million CFIDS patients around the world. This organization has an extremely dedicated staff and is respected by researchers and clinicians internationally. The CFIDS Association has been a lifeline for thousands of us who are affected by this illness. I have been a member for the past 17 years and am extremely grateful for all they have done to help the CFIDS community!

The Great!

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

I have been a member of this organization for 17 years.

Ways to make it better...

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

It would be great if this organization had more donations, because they use the money very carefully.

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

June 6, 2011

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June 6, 2011

I am a person who's been suffering with the disease originally known as Myalgic Encephalomyelitis then Chronic Fatigue and Immune Dysfunction Syndrome and now ME/CFS for 26 year. I am embarrassed to say that I have been donating to this association for years through payroll deduction at work.

CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome. It is a complex nuero-immune disease that is poorly understood and trivialized by the CDC by their horrible name: Chronic Fatigue Syndrome . This name has condemned the 1 to 4 million Americans suffering with it to a life of mistreatment and disrespect by friends, family, employers, co-workers AND the medical community.

Among all the dis-services done by the CAA, this organization was responsible for this name to remain as when it was to be changed by a Congressional Order back to Myalgic Encephalomyelitis, they stated that changing the name would make it more difficult for sufferers.

The CFIDS Association, Inc, also known as the CFIDS Association of America (CAA) is the puppet of the CDC and DOES NOT represent the needs of people suffering from Myalgic Encephalomyelitis. They exist to support the high salaries of their officers.

The Great!

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

not being able to receive proper medical treatment.

Ways to make it better...

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

Dis-ban them completely.

More feedback...

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

No

How do you feel you were treated by this organization?

Badly

How did you find this group?

Web search.

What, if any, change in your life has this group encouraged?

They have ruined my life by perpetuating the disease Myalgic Encephalomyelitis. Because of their actions I have not been able to receive proper medical care or treatment, I have lost jobs, my marriage dissolved and my children grew up without the benefit of a father who could be there for them when they needed (Boy Scouts, Girl Scouts, Little League, being a friend).

When was your last experience with this nonprofit?

2011

April 25, 2011

I am dismayed by the nitpicking I see in the ratings here. This is the major patient support organization in this country and has been for a very long time. And efforts to change leadership, like efforts to change the name (to what? - this has been hashed and rehashed with the conclusion that we need to wait) are in my mind a step backwards. We don't have that kind of time, nor should we weaken the association as it struggles to get the national support we need to take on this terrible illness. I've had cfs since 1977, before there was a name. This association has been a major factor in the fight. Other cfs organizations over the decades have come and gone. And still others have joined in the fight. They have all worked and/or continue to work towards the goal of defeating cfs in their own ways. If you don't like the association, join the others. Build. But don't tear down what has taken decades to create. They shifted from an emphasis only on research to advocacy because there was no way we could produce the resources on our own, especially since most pwcs can't earn. We need government resources. Only on that scale can we tackle the research, and the education of the medical profession. And still the association works at research on its own too. I have mostly appreciated the evolution of the association as things have changed over time. And will continue to support it even if I may disagree with some aspects. I won't cut off my nose to spite my face. For those writing with such emotion, I understand the pain of lives decimated. But look within and direct our pain more productively. There are no answers.............yet.

The Great!

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

In 1977 there was nothing. A desert. No support from an association, the medical profession, even family. The association was the second that I was aware of. And the one that survived and grew. And it kept its feet on the ground. Let fact lead, not fantasy discredit. It became a lifeline, a link to hope. It has kept many of us alive and given us a way to fight. To fight disbelief, ignorance and high-minded blindness. It validated.

Ways to make it better...

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

I'm hoping that the association is taking in any good ideas that come along. I've no obvious changes to suggest but am required to write something in this section.

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 24, 2011

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Review from Guidestar
April 24, 2011

Doing good research but they have a terrible history on advocacy, seem very confused about who it is that they are attempting to advocate for (all people diagnosed with "CFS" using any diagnostic criteria or a focus on those who are sickest ME patients and who, ironically would never be allowed into a CDC study - or the CAA's own Biobank - as they are "too sick").

This issue of focus is critical and it has been neglected for over a decade by CEO, Kim McCleary. She is wildly overpaid for someone who is repeatedly having to apologize to the patient community for her confusing public statements (the CAA can write a decent letter of explanation after having pondered a topic for a few weeks but their statements to the media about "breaking research"(eg. the Pace trial) have been both disastrous (creating a situation where CFS is actually less well understood by patients, friends, family, clinicians and researchers) and illuminating with regards to the failure of leadership and a clear mission at the CAA ).

Supposedly the CAA is now no longer a patient advocacy group but they will still need to deal with the question of who they are trying to represent. This is crucial in order to focus their research efforts on a well defined patient cohort. I'm very skeptical the present leadership of the CAA has the skills to accomplish this or the insight to admit this critical short coming. I guess we'll see.

The Great!

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

I enrolled in the CAA's Biobank. Completed initial screening forms and then there was no follow up (I later learned that other patients were contacted and had blood drawn). No explanation from the CAA as to why I was not included or that the blood collection had taken place. Was I excluded because I was too sick (consistent with the ironic CDC guidelines that have been so widely discredited)? I could ask but in the overall scheme, I lost too much faith in this organization to care.

Ways to make it better...

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

I would replace the CEO and revisit the mission and who the CAA is trying to serve. They also need to engage the patient community. Right now they have retreated to their "bunkers" because of strong criticism from those they purport to represent. rather taking stock and asking why the strong reaction from those they are trying to help.

April 20, 2011

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Review from Guidestar
April 20, 2011

I am a client well served by the CFIDS Association. I am a 27+ year, disabled sufferer of the illness. I really appreciate their very kind, professional staff who have always been there for me. It is frustrating to have an illness that is so new and has no PROVEN treatments yet but I believe the Association is doing their very best to address this difficult situation. Patience is hard with such great suffering but I believe many of the advances in terms research and advocacy have come as a result of this invaluable organization and their valiant fight for us! I

The Great!

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

I believe the NHI and CDC as well as many other organizations now ACCEPT this as a valid illness due to CFIDS Association perseverance. Their e-mail updates and newsletters have been a great help to me and my doctors.

Ways to make it better...

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

I would make this disease easier to understand fo ALL involved.

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.

April 12, 2011
1 person found this review helpful

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Review from Guidestar
April 12, 2011
1 person 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

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Review from Guidestar
April 11, 2011

I say that I am a "client served" because the CAA purports to speak for me, a person with the serious neuroimmune disease now referred to as ME/CFS. They do not speak for me. They have refused to involve themselves in some of the most significant issues regarding this illness that would affect how it is viewed and treated, such as ICD coding used by insurance companies and proposed changes to the DSM. The CEO in an interview with CNN failed to point out known negative medical consequences for the most seriously ill patients of a therapy being discussed and even seemed to unquestioningly endorse it. The CAA does not act or speak in the interest of patients.

The Great!

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

disrespect of the public through the CAA branding of the trivializing name "chronic fatigue syndrome" (instead of lobbying for a more appropriate name) and failure to drive home the debilitating nature of the illness.

Ways to make it better...

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

insist on a change of leadership although frankly I don't know if reform is possible.

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