The Cfids Association Of America, Inc.

Rating: 4.14 stars   80 reviews

Address:

6827 Fairview Road Charlotte NC 28210 USA

Mission:

The mission of the cfids association of america is for me/cfs to be widely understood, diagnosable and treatable by: identifying safe and effective treatments for me/cfs; strengthening the me/cfs community by empowering patients and engaging greater numbers in our cause; and aggressively expanding funding for research that will lead to approved treatments and cures for me/cfs.

Results:

Since 1987, the Association has invested more than $30 million in programs to end the pain, disability and suffering caused by CFS.

Programs:

Research - the cfids association has worked over the past 5 years to invest our constituents' donations in our research institute without walls (riww). Our innovative riww continues to provide early funding to the most promising researchers, using our solvecfs biobank to put patients at the center of that research; pairing patient samples and clinical information with the brightest investigators from the best medical institutions in the world. The research institute without walls focuses on: identifying disease subtypes and biomarkers (45%), developing disease-modifying treatments (25%), defining me/cfs (20%) and software tools (10%). Identifying disease subtypes and biomarkers - me/cfs is a multifaceted and complex disease. To discover the cause and effective treatments we must break down the complexity and identify groups of patients that are similar to one another. How is that done? With blood and clinical information. Blood is a 'molecular biopsy' that can provide clues to biology from all parts of the body. The solvecfs biobank harnesses the power of patient information and patient samples. The biobank has attracted some of the brightest investigators from the best medical institutions including harvard, columbia, johns hopkins, university of alberta, nyu langone medical center and university of toronto. Developing disease-modifying treatment - while funding cutting edge research to identify a cause, we are also identifying treatments that can help restore function and alleviate symptoms of me/cfs. While we work towards a cure we must develop disease-modifying treatments. Defining me/cfs - diseases must be clearly and unambiguously defined so that causes, and the cures can be discovered. We partnered with lenny jason of depaul university to use the data from the solvecfs biobank to help refine how me/cfs is defined. This research will help identify the "core signs and symptoms" of me/cfs so that the disease can be measured the same way by all investigators. The cfids association of america is working on a partnership with a real-time online platform where people can connect with fellow patients and expand our capacity for patient centered outcomes research through their shared data. The data can help researchers better understand the nature of the illness, detect patterns, and develop more effective therapies. Partnering, combining,g and growing our community, we will create a big data set of "well-defined and reliable" patient-reported outcome measures to provide evidence of treatment benefit. Managing, understanding and using this kind of big me/cfs data will be key to innovating the effective treatment for me/cfs patients. Software tools - we have partnered with a biotech company to build a digital library - one centralized knowledge base - of all the me/cfs medical literature and all open source biological data sets. This digital library brings the information to one place and translates it into a standard form. Software is under development to integrate this knowledge in order to generate theories that can lead to therapies.

communications and engagement - the association knows that we can't achieve our goals without an informed and connected patient population. Patients are a key ingredient to making me/cfs understood, diagnosable and treatable. To that end, we are working to empower patients with more information through our catalyst cafés, e-newsletters, the solvecfs chronicle publication and online. More than a quarter of a million people visited the cfids association website last year, most searching for answers, looking for hope. The association holds the most extensive library of patient information and resources, reports on the latest updates and research opportunities and helps patients feel less alone. In an effort to make this information easier to find, readily share-able and more deeply engaging we launched a new web presence which replaces the solvecfs biobank micro-site, cfids. Org and the research1st blog with one synthesized online presence. The synergy achieved through www. Solvecfs. Org will reach more patients, engage more in the research process, and better involve all me/cfs stakeholders in the important work of the association. Early numbers tell us that people are staying on the site more than twice as long as they did on the old website - a key indicator that visitors are finding what they need in a more welcoming format. We continue to hold catalyst café events across the us. Meeting in homes and offices, restaurants and community rooms, association staff members are bringing details about our research program and its impact to people who are most affected by me/cfs.

2014 Top-Rated Nonprofit
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(704) 364-0016
www.solvecfs.org

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Reviews for The Cfids Association Of America, Inc.

Rating: 5 stars  

1 person found this review helpful

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!

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

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

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.

 
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Rating: 1 stars  

3 people found this review helpful

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.

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

not being able to receive proper medical treatment.

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

Dis-ban them completely.

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

 
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Rating: 5 stars  

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.

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.

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.

 
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Review from CharityNavigator
Role: Client Served
Rating: 1 stars  

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.

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.

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.

 
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Review from Guidestar
Rating: 5 stars  

1 person found this review helpful

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

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.

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

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

 
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Review from Guidestar
Rating: 1 stars  

3 people found this review helpful

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.

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.

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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Review from Guidestar
Rating: 1 stars  

2 people found this review helpful

The CAA has been a colossal failure to those of us who suffer from nuero immune illnesses. They fail to put the proper resources into the most promising areas needing to be researched. Their CEO, Kim Mcluess consistantly manages to set new lows except in her pay. This orginization needs to be disbanded.

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

Every additional day I'm sick is a testimony to there inefficiency

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

Burn it to the ground and start over

 
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Review from Guidestar