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 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 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.
Review from CharityNavigator
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.
Review from Guidestar
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
Review from Guidestar
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.
Review from Guidestar
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.
Review from Guidestar