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38 Reviews
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July 1, 2011
5 people found this review helpful

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July 1, 2011
5 people found this review helpful

Really, I am a CLIENT NOT SERVED. The CFIDS Assn of America, Inc. exists for the purpose of paying large salaries to its CEO, Kim McCleary, and its Research Director, Suzanne Vernon. They are in the business of keeping their salaries. They have proven again and again that they do not care about the people suffering with the illness. They should just disappear and stop torturing patients.

The Great!

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

having my doctor insult me based on the information they gave, together with the Center for Disease Control, to medical professionals. They not only do not serve sufferers; they cause them additional problems.

Ways to make it better...

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

get rid of McCleary, Vernon, and their rubber-stamp Board of Directors.

July 1, 2011
2 people found this review helpful

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1 previous review
February 27, 2011

The CAA really don't do what they were set up to do.. Many CFIDS/CFS/ME (all the same illness - silly ain't it) patients are upset and disappointed with their poor track record. One patient forum ha... more

July 1, 2011
2 people found this review helpful

There is no role category for 'client not served' so the role indicated here is misleading. The CAA were originally a patient-led organisation. That all changed a decade or more ago. Now, it's more of a gravy train for the CEO and scientific advisor. They fail to publicise important developments or get behind others in the field that are doing useful work. Their sole raison d'etre appears to be to keep themselves in business, with an ever growing constituency of sick people to milk.

It appears that members of the CAA have been reviewing themselves on these pages - their underserved client base would not write reviews such as I see published here, with five star ratings. See the patient poll here: http://forums.phoenixrising.me/showthread.php?10169-Caa-poll

The Great!

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

Trying to suppress the truth, and trip up people who are working to bring help to the +/- one million Americans with ME aka CFS/CFIDS.

Ways to make it better...

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

Sack the lot of them

February 27, 2011
2 people found this review helpful

The CAA really don't do what they were set up to do.. Many CFIDS/CFS/ME (all the same illness - silly ain't it) patients are upset and disappointed with their poor track record. One patient forum has a poll up on this here http://forums.aboutmecfs.org/showthread.php?10169-Caa-poll where you can see there is an overwhelming need for the CAA to change both leadership and direction.

For the patients, the Whittemore Peterson Institute (also part of this competition for funds) have done more in a few short years for them than the CAA has ever done.

The Great!

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

Advocacy, it suck.

Ways to make it better...

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

Get rid of the board, the scientific advisor and the CEO

More feedback...

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

None

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?

They are the major ME/CFS group in the States.

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

none

When was your last experience with this nonprofit?

2011

July 1, 2011
4 people found this review helpful

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Review from Guidestar
July 1, 2011
4 people found this review helpful

I would refer to myself as a "Client Unserved" by CAA. I have had viral CFS for over 20 years, and my disease is still referred to as "Chronic Fatigue Syndrome", there is still no FDA-approved treatment for the disease, and the CDC has been able to change the definition of the disease twice since I was diagnosed, and has changed it to a watered-down definition that no longer represents the original illness. As far as I am concerned, CAA has accomplished absolutely nothing. We have gone backwards. In fact, I suspect that they are receiving funding from those who hope to continue the obfuscation surrounding this disease. Their scientific director was employed by the CDC and contributed to 3rd revision of the disease definition, which cannot distinguish between CFS and depression. Their CEO seems to have had no work experience other than with CAA. There is something very wrong with this picture.

The Great!

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

..my physicians' unfamiliarity with the disease, the lack of testing and treatments for the disease, the social stigma associated to the disease, and the general failure for the understanding of this disease to progress over two decades. CAA was supposed to be an advocacy group, then changed to a research group but failed to notify patient stakeholders and still have not informed the media about their new mission, so the media still asks them for statements in their old capacity as an advocacy group.

Ways to make it better...

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

...change the leadership immediately. I would be transparent about who is funding the organization. I would serve the interests of people with the disease CFS, and not those who are merely "unwell" or "fatigued". I would lobby the government to use an accurate name and definition to describe the disease. Most importantly, I would not use my position and money to suppress the truth about CFS.

More feedback...

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

None

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?

physician recommendation

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

I've became an advocate in an attempt to undue the damage that they have done

When was your last experience with this nonprofit?

2011

June 19, 2011

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June 19, 2011

In 1986 I was a healthy, energetic student working on my Ph.D. when I found myself suddenly bedbound with a mysterious illness that even my doctors didn’t understand. It was a frightening time during a period when there was incredibly little known about ME/CFS and like most sufferers I felt isolated and alone. The resources that the CFIDS Association of America (CAA) provided were a lifeline giving me a way to understand a complex and baffling array of symptoms when I might have otherwise questioned my own sanity, information and a language with which to educate doctors and friends alike, and the feeling that there in my dark bedroom I was still part of a larger community.

In the intervening years under Kim McCleary’s leadership and with the support of wonderful staff and board members, CAA has continued to be a trusted resource and tireless advocate. Suzanne Vernon has been a brilliant addition to the team and I am hopeful that focusing more resources directly on research will bring us all closer to treatment and cure. CAA has my infinite gratitude.

The Great!

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

1) Research and treatments that have directly and positively affected my condition. 2) Brochures, newsletters, expert lectures, and information from the CAA website that have helped me understand my condition and explain it to others. 3) The hope that comes from knowing the CAA is providing direct advocacy tothe NIH and other organizations as well as the research they have funded.

Ways to make it better...

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

I would ask that the CAA support adoption of ME/CFS as the name of the condition even if it doesn't accurately reflect the yet to be understood aspects of the disease. Easier said than done, I also think leadership needs to do whatever it can not to be distracted from the organization’s mission by subgroups of the patient population who sadly seem to feel so disenfranchised that they are willing to divert resources from the very organizations who are trying to help.

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 6, 2011
3 people found this review helpful

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June 6, 2011
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.

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

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 11, 2011
2 people found this review helpful

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Review from Guidestar
April 11, 2011
2 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.

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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