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July 13, 2012
2 people found this review helpful

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July 13, 2012
2 people found this review helpful

I became sick in 2003, diagnosed in 2004 with CFS, Chronic Fatigue Syndrome, and I've been disabled by it since. From the beginning, I wanted to learn everything I could about the illness to help both myself and my doctors to find the leading voices in research and treatments for the condition was obscure at best and even maligned and disbelieved. Early on I was glad to discover the CFIDS Association of America on-line--and that there was a better name for what I have: Chronic Fatigue Immune Deficiency Syndrome. "Chronic fatigue"--which without the capital letters is a symptom of many different illnesses that are not the same disabling and complex disease as CFS. "CFIDS" was coined at a time when another Immune Deficiency Syndrome was being taken very seriously by the medical community and government research funders, and comes closer to capturing the severity of this illness. Things like the name of an illness may seem like splitting hairs to someone outside of the patient community, but it has mattered greatly for generating funding as well as basic empathy, and the CFIDS Assoc. has headed the charge for patient advocacy since long before I became sick. Their advocacy resources were really helpful for defining the illness, the history of it and the case definition, info to share with family and friends as well as doctors, how to manage daily living--things that people disabled by illness need. Over time I came to appreciate the difficult task they had of trying to push government institutions and drug companies to respond to this health crisis; what they couldn't describe in their materials was that they were as frustrated and disillusioned with the system for funding research as the patient community was. Us PWC's ("People With CFS") began to dig more deeply into the science of the illness trying to figure out ourselves what our medical leaders weren't, and in the first few years of my illness the CFIDS Assoc. wasn't so strong in the detailed scientific studies that many of us wanted. However, in the last few years they've made a huge shift in that direction, funding research themselves and connecting researchers and their studies for exponential good. It's palpably exciting. The webinars the CFIDS Assoc. present lead by the scientist and clinicians they've funded have been the best medicine I've received. Suffering through the first years of an illness so misunderstood and understudied was an insult on top of the injury of the illness itself, but listening to the researchers shows that our suffering has not gone unnoticed; smart and kind people are on the trail, help is on the way. We can focus on rest and healing and not having to prove that we're sick. Through no fault of the CFIDS Assoc., disappointment naturally will follow the hopefulness the webinars elicit, for while the research validates and corroborates the symptoms we feel it's clear that the science has a long way to go before causal agents are pin-pointed or the resulting multi-systemic syndrome is unraveled enough for treatment interventions. Still, this validation--for the scientific world out there as well as the inner psychological landscape of us PWC's--is technically and organizationally the right start. On a practical level, printing out graphs and diagrams from the webinars gives me something to show not just friends and family but also my doctors the bio-physiological differences between tired healthy people and PWC's. Earlier this year I was thankfully able to get to a CFIDS Assoc.-sponsored gathering in my city called a "Catalyst Cafe," where Pres. Kim McCleary and Scientific Director Suzanne Vernon rolled out their new initiative/organizing principles for a Research Institute Without Walls. Along with others in the broader medical community, they realized that the paradigm of one-off studies performed with widely divergent criteria in isolated bursts of interest from a variety of institutions have lead to "apples and oranges" results in the medical literature and few gains that actually help patients. Creating a new paradigm of patient-centered research, they outlined how recent CFIDS Assoc. grantees' studies (the ones that have been so validating for me in webinars) lead to additional and greater funding from outside for further studies--real momentum rather than the stagnant efforts of government groups! They also outlined how the current and future grantees will collaborate and communicate while utilizing a BioBank of samples so that they and the medical literature will soon talk "apples and apples." My husband and I have just volunteered to be part of that BioBank, to do what we can to help the CFIDS Assoc. studies and advocacy for this group is now way ahead of anything I hear coming out of other sources, including the NIH and CDC. Through their website and newsletter, I keep abreast of these big picture developments, but also find meaningful connection with others with this illness through their links to some of the best CFS blogs. This illness is isolating, but these resources help me to feel a community.

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 25, 2012
3 people found this review helpful

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June 25, 2012
3 people found this review helpful

I have been a strong supporter of the CFIDS Association of America for over 20 years. I was privileged to serve on its board of directors for several years until my illness became too severe for me to continue. I first became aware of the CFIDS Association as I searched for information about chronic fatigue syndrome after being diagnosed with this devastating, poorly understood illness. The information I received from this fine organization was always the most reliable and scientifically sound information available. The CAA was always a beacon of hope for me, particularly when my teenaged daughter was diagnosed with the same illness. When the CAA learned that I was willing to speak publicly about my illness, they provided me with many opportunities to do so, from the National Institutes of Health to the US Congress, from small radio and TV stations to Oprah. When I became a member of the board of directors, I worked with other volunteers, most of whom were living with CFS, who were willing to devote their very limited resources to this fine organization. The staff has always been completely dedicated to the goal of understanding, treating, and curing this disease.

In recent years, the CAA has turned its efforts toward creating a research environment in which these advances can be made. They have funded and coordinated a group of dedicated researchers, the “Research Institute Without Walls”. As a former scientist, I have been very excited to see this kind of research effort blossom and I am more optimistic than I have ever been about CFS research. The CAA shares information about this research and other CFS research through its Research 1st website, its newsletters, and a wonderfully informative series of webinars. The dedication, professionalism, and vision of the CAA is always inspiring and encouraging to me and I am proud to be a supporter of this great organization.

More feedback...

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 23, 2012
1 person found this review helpful

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June 23, 2012
1 person found this review helpful

The CFIDS Association's Research Institute Without Walls is facilitating research into ME/CFS that traditional sources like NIH, CDC, etc haven't been funding as they ought to. The Association works hard to dispel myths about ME/CFS and to educate people about this horrid, disabling illness. Research and education provide hope. Thank you CFIDS Association of America!

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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?

Very Well

When was your last experience with this nonprofit?

2012

June 18, 2012
2 people found this review helpful

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June 18, 2012
2 people found this review helpful

After my diagnoses in 2005 I turned to The CFIDS Association (CAA) in order to educate myself about CFS and search for healthcare providers. Although I also have Fibromyalgia I never felt as connected to the resources available for that illness as I did with The CAA. The professional and personal dedication of the handful of people that make up The CAA to finding biomarkers, treatment and possibly a cure for CFS has never wavered, and I appreciate their focus on collaboration and hard science as a vehicle. I have benefited from their information sharing, (free webinars, Research1st page, CFIDS page, CFIDS on FB & Twitter), their support and representation at the government level (CFSAC meeting, etc), research grants (several solid ongoing research projects they support), and I believe their collective years of experience and passion for this cause are demonstrated through their work. This is why I support them with donations, but I also organize charity events and donate a portion from sales of my art work. The CAA understands that creating an environment of collaboration among scientist, biopharmaceutical companies, the government and The BioBank will hasten the Race to SolveCFS.

More feedback...

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

October 5, 2011
4 people found this review helpful

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Review from Guidestar
October 5, 2011
4 people found this review helpful

I began 5 years ago with this debilitating illness looking for help to understand what I was experiencing. No physician will help or even acknowledge the Name of my demise. CAA was front and center with information on their website, I began to follow. Over the 5 years, my health is worse, I can no longer work, and I can see that this organization is more about gaining funding to keep their jobs, and be the beloved puppy for the CDC & CFSAC Committee. CAA is more about carrying out the mission of denial, disgrace & destruction toward those who are out in the field trying to find the bio-markers, diagnostic tests & any hope of medication or treatment. I seriously don't see they are interested in advocating for the needs of people with this debilitating illness. They don't even have enough respect to change their name to acknowledge Myalgic Encephalomyelitis (ME) which is the real deal here. They seem to be more of an attack dog for the CDC to sabotage progress. My intuition is rarely wrong, and I have been unable to accept any information that comes from the CFSIDS Assoc. as legitimate progressive support for a growing, yet rapidly tragic future of recovery.

The Great!

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

When at the NIH State of the Knowledge Workshop last April, 2011. I happened to sit next to CEO Kim McCleary that day. In making light conversation during a break,she was dismissive and arrogant. I knew, she wasn't interested in any feedback I could offer of the presentations we had just heard. I felt I was not the person she was representing as CEO of a Patient Advocacy Group. When she gave her presentation, it was clear who she is working for by the comments she made pandering to those who send her $$$.

Ways to make it better...

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

1)Get the name right, its ME, as in Myalgic Encephalomyelitis! For an advocacy group you are 30 years behind. 2)Reorganize with more funding directed to Patient Needs than CEO Salaries and marketing to discredit their perceived competitors, those researchers "who are trying" to discover the real medical findings to get us back to work. 3)if you are going to stroke the CDC , at least show that you have made a difference in actual progress toward more than having an insider seat & a voice at a meeting.

More feedback...

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

A little

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?

Disgraceful, demeaning and oppositional.

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

Increased confusion, worse health status and discouragement knowing that they are behind the attacks on the organizations who need funding to make a difference. They are simply selfish.

When was your last experience with this nonprofit?

2011

July 1, 2011
5 people found this review helpful

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

another client not served--the CFIDS assn of America has been doing disservice to the people it says it represents for 20 years now, since it was taken over from its founder by Kim McCleary. They say they are no longer a "patient organization," and now they are a "donor organization." They did this when the number of their members was dropping like a stone. I think they did it because they do not want to have to make public how few people with CFIDS actually support them. They have joined with the US Govt Center for Disease Control to make the plight of sufferers even worse, by publishing materials for doctors which tells doctors the disease is all in patients' heads and what they need is behavioral therapy and exercise, which have actually been proven not to help and exercise frequently causes worsening of the disease. This organization should be closed down.

The Great!

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

I was on the receiving end of the CFIDS Assn's quest solely for funding without helping patients

Ways to make it better...

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

Fire Kim McCleary and Suzanne Vernon, or close down the organization and start over again.

July 1, 2011
5 people found this review helpful

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

For lack of another descriptor, I am a Client Served; however, I am served something very unpalatable. The CAA does not represent the interests of the patient community. This feeling is widespread. A petition to dissociate from the CAA has netted close to 600 signatures (http://cfsuntied.com). The CAA has contributed to the mischaracterization of this illness by promoting an inappropriate and belittling name, Chronic Fatigue Syndrome, as opposed to the historical name, Myalgic Encephalomyelitis. They have failed to advocate with respect to case definition, ICD code, proposed changes to the DSM, and funding of research into infectious agents. This is not just a patient issue but a public health issue. After the Executive Director, Kim McCleary, in a CNN interview seemed to endorse the dangerous "treatment" of Graded Exercise Therapy, the CAA announced that they were not an advocacy organization but rather a research organization. Yet they are still available to give comments to the press as if they were an advocacy organization. The CAA represents the interests of the insurance industry and governments whom do not want to treat this illness as legitimate, not the interests of patients.

The Great!

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

the impact of their actions or lack of action on public and medical perceptions of the illness and the nonfunding of biomedical research into etiology.

Ways to make it better...

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

encourage it to fold.

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

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