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Nonprofit Overview

Causes: Arts & Culture, Health, Printing & Publishing, Specifically Named Diseases, Voluntary Health Associations & Medical Disciplines

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.

Community Stories

28 Stories from Volunteers, Donors & Supporters

4

Client Served

Rating: 5

There is no cure for ME/CFS and no treatment available within the medical system, a fact that can make the future seem bleak at times. However, I am able to have hope for my future because of the knowledge that the people at the CFIDS Association (CAA) are working tirelessly to solve ME/CFS. Because of the CAA I have hope that there will one day be a cure for ME/CFS. As well, I receive frequent updates on current research funded by the CAA, reminding me that that work is being done each day to help me. This gives me validation and support in my struggle. The CAA also compiles knowledge and treatment information from top experts around the world, and this information has prompted me to make changes that have improved my quality of life.

Review from Guidestar

3

Client Served

Rating: 5

I am very excited about the research they are startimg. The best part is they aren't locked into any one theory on why this is happening.

Can't wait to see the results

Review from Guidestar

3 Joe_60

Client Served

Rating: 5

I have been a patient advocate in this area since 2009, and have already seen many groups and individuals rise and fall in a brutal field for a brutal illness, Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome. SolveCFS remains through all the turmoil of scientific disagreement, bureaucratic malfeasance, clinical disdain, scandal and scientific retraction. They have a demonstrable record not only of survival, but of parlaying small research studies into definitive findings and larger follow-on studies, maximizing limited research budgets. They make the effort to show up and meet patients at most related Federal and non-profit conferences on the illness. I only wish more outside researchers would realize the contribution they are making.

Review from Guidestar

3

Client Served

Rating: 5

I could write a soliloquy for this review...

Simply put.. They give me hope.


-DJ

Review from Guidestar

1

Client Served

Rating: 5

Solve Me/CFS (aka, CFIDS Association) is a lean green fighting machine. Fighting to get the answers that will bring treatment or even cure for people like me. I have been very ill for 30+ years and still there has been no research done to explain the cause of ME/CFS.
Medical research is usually funded by the government and then picked up by drug companies. However the government has refused to adequately fund ME/CFS research in all my 30+ years.
So now Solve ME/CFS is ingenuously funding researchers via patient donations.
In just three short years this research has already yielded staggering information on the probable cause(s) of ME/CFS and even pointed to possible treatment by drugs already approved by the FDA.
Every penny Solve ME/CFS receives generates many dollars worth of results for understanding and hopefully treating the disease.
And those results are immediately available to researchers in other fields who may benefit too.

Review from Guidestar

1

Client Served

Rating: 5

I am the mother of a 28 year old young man who was diagnosed with CFS at the age of 20 after becoming acutely ill at 19. In hindsight, it seems clear that David's struggle began many years before leaving for college, maybe even 15 years ago. It was apparent to us that something was not right, but all the labs always returned normal. Unfortunately, he was unable to complete more than 2 years of college. How he was able to do that is due to heroic efforts on his part and desperately wanting a normal college life. A very bad case of mono blew things out of the water and David's body seems to reactivate this virus ongoing. David's immune system does not function properly, he has developed food allergies, as though his body sees food he has eaten for years without issue as an invader. Stomach issues have been some of the worst symptoms for him to tolerate. He is unable to eat outside our home and has lost over 20 pounds, when he was already too thin. I noticed in high school that as David's friends gained muscle mass and became manly, David seemed to be losing muscle mass.

David was diagnosed with CFS by Dr. Peter Rowe at Hopkins, due to his allergy & immune issues as well as orthostatic intolerance. Peter was the first to tell us that CFS patients are unable to digest milk protein, even though the allergy tests always return as negative for milk allergy. For years we thought it was only lactose intolerance, we were poisoning his already compromised immune system. There were many other untreated infections throughout David's medical history, several doctors believe that David has serious & complex infectious disease issues, no one knows how to treat them.

It is our belief as David's parents that research to identify bio markers and treatment options is the best hope for improving the lives of patients. David suffers physically & emotionally everyday, he is too disabled to work, have a girlfriend, raise a family, or do anything that defines a life. These patients have been ignored and mistreated for far too long. The best resource for good information and assistance throughout David's journey and ours as his caretakers, has been the CFIDS Association, now the Solve ME/CFS Initiative. They are well managed, well organized and very scientific in their approach. They deserve to be well funded as their mission is focused on research, as it should be.
Diane & John

Review from Guidestar

Client Served

Rating: 5

I have ME/CFS and have found the organization to be very impressive...and helpful. It has been an incredible reference for me to learn about the disease and to find out what is happening in research/government, etc. I also really appreciate that the organization travels around to hold roundtables around the country - for so many of us, it's the first time we've been both able to talk to experts and to get support. (And I"m impressed and appreciative that these roundtables are focused on our needs and not asking for donations, however important that is.) And while I"m fortunate not to be housebound, holding "webinars" to let us know what's going on is fantastic. The staff (and board members I've met) are so committed.

I also value the organization's recent turn to emphasize leading/funding research. While I value everything it's done historically, the paucity of funding and research into ME/CFD makes the organization's efforts in this area critical if we are to make headway in understanding and treating the disease.

In sum, when I see/read all that Solve ME/CFS does (and has done), I'm amazed that so many things have been accomplished by such a small organization.

Review from Guidestar

7 Wildaisy

General Member of the Public

Rating: 1

This organizations says it represents the interests of people with "CFIDS." Maybe it does. CFIDS is a wastebasket diagnosis that includes people who are simply tired or depressed. However, the disease from which I suffer is Myalgic Encephalomyelitis (M.E.) which is a much more complex illness, with both physical and cognitive symptoms. The symptom of overwhelming fatigue is only one symptom in many. M.E. is defined by the International Consensus Criteria. (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract ).

Most recently, on August 8, 2014, the day set aside by M.E. patients to recognize the existe.ce and needs of patients with Severe ME--Severe ME Awareness Day--this SMCI chose to publicize an article about vacationing while ill. This is a ridiculous slap in the face of every real ME patient. I would like to have made my comment directly to the CAA/SMCI, but they have blocked me from posting there.

If CAA/SMCI actually represented real patients in the past, it does not do so now. Now it is only interested in maintaining the extraordinarily high salaries and benefits of some of its employees and perpetuating the existence of the organization.

These people should be ashamed to be pretending to represent this neglected patient group. They could at least be honest and rename their organization to something which reflects the fact that they really represent tired and depressed people, not people who actually suffer from the all-too-real illness of Myalgic Encephalomyelitis.

Review from Guidestar

Previous Stories
4

Client Served

Rating: 1

I have been suffering from Myalgic Encephalomyelitis (also called Chronic Fatigue Syndrome) for 30 years. For the last ten years, the CFIDS Assn. of America has served its own interests (large executive salaries and special benefits) rather than the needs of people who suffer from M.E. They continue to misrepresent the serious and life-destroying nature of the illness as merely annoying. They spend the available research money on psychological research rather than researching the physical cause of this very real illness. They are now advocating Cognitive Behavior Therapy and Graded Exercise Therapy for the physical illness which has disabled me and now keeps me bedbound. Further, they refuse to answer questions from M.E. patients about where they get their funding and how they spend it. They are much worse than unhelpful to M.E. patients; they are actively harming us.

2 hope4us

Client Served

Rating: 5

The CFIDS Association proactively encourages ME/CFS researchers with seed grant money. They are fill a niche for small researchers to prove their hypothoses and then to obtain much bigger grants from the NIH.

Previous Stories

Donor

Rating: 5

I have had CFS for 5 years and have went from working in excess of 40 hours per week when healthy, to part-time and last year to totally disabled. I have a lot of time to lie down and think each day and I believe that my best chance of getting well is to support the CFIDS Association.

This organization has and continues to provide funds for innovative research projects that would likely not be done otherwise. One of the projects is even coming close to finding the first biomarkers for this disease!

Biomarkers would help doctors, for the first time, to recognize this illness in their patients. And biomarkers would justify more research grants, especially from the government. But mostly, this horrible illness will come a big step closer to being understood, treated, and possibly cured one day. I am betting my life on the CFIDS Association.

1 frenchtulip

Client Served

Rating: 5

For nearly twenty years, The CFIDS Association has provided me with invaluable information on ME/CFS and the latest research. They have engaged in advocacy which has greatly advanced our cause. Recently, they established an innovative "Research Institute Without Walls" to facilitate a scientific understanding of the illness. This is a superb nonprofit with a highly professional staff. I am enormously grateful for all they have done to help me and the countless other patients in this country and around the world!