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.

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(704) 364-0016
www.solvecfs.org

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Reviews for The Cfids Association Of America, Inc.

Role: Client Served
Rating: 5 stars  

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.

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

 
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Rating: 5 stars  

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.

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

 
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Rating: 4 stars  

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!

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

 
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Rating: 5 stars  

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.

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

 
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Rating: 1 stars  

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.

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 $$$.

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.

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

 
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Review from Guidestar
Rating: 1 stars  

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.

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

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.

 
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Review from Guidestar
Role: Client Served
Rating: 1 stars  

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.

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.

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

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

 
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Role: Client Served
Rating: 1 stars  

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

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.

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

Sack the lot of them

 
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1 previous review
Rating: 1 stars  

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.

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

Advocacy, it suck.

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

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

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

 
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Rating: 1 stars  

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.

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.

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.

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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Review from Guidestar
Role: Client Served
Rating: 5 stars  

1 person found this review helpful

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.

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.

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.

 
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