The CFIDS Association of America, Inc.
Rating: 4.09 stars 80 reviews
Location: PO Box 220398 Charlotte NC 28222 USA
Results: Since 1987, the Association has invested more than $30 million in programs to end the pain, disability and suffering caused by CFS.
Programs: The Association is proud to lead national efforts in CFIDS awareness and education, public policy and research and we are grateful to those who support our work. The CFIDS Association offers information and resources to patients, family members, caregivers, support groups, media professionals the general public and health care professionals. The Association focuses its resources on research, policy and communications that will advance understanding, diagnosis, treatment and prevention of CFS. We are grateful to all those who support our vital work.
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This is an amazing organization with a smart, caring board. I feel like this organization gives so much hope to the people they serve.
I strongly support the Solve ME/CFS Initiative (SMCI) -- their mission -- their advocacy, their research, but most importantly the help and hope they continue to provide to countless patients and their families. This is what a good good non-profit organization has to do. They have to with great purpose and meaning educate the general public; help establish a sufficient level of quality research; and be a strong voice for those patients and children who struggle each and every day with a misunderstood and often poorly treated medical condition. My family personally knows a family that has found support, resources and a sense of community from Solve ME/CFS Initiative (SMCI). We have seen first-hand the difference that this advocacy organization has made in their lives. Generous donations are critical to the success of this outstanding organization so make one today! Duchy Trachtenberg, MSW
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.
For more than 25 years we have witnessed the daughter of friends cope with the debilitating effects of CFS. Distressingly, a cure seems beyond the horizon. Lacking significant support from the government or pharma, research is neither wide-spread nor adequately funded. Therefore, it falls to the hands of those outside the system to stimulate the research effort. Through our friends we have become familiar with the Solve ME/CFS Initiative and its efforts to attract and sponsor scientists interested in finding a cure. We’ve been impressed with the well thought out plans of the organization and its efficacy in translating them into action. We’ve become supporters of SCMI. It clearly deserves the support of others, as well.
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
The CFIDS Association is run by smart, caring, dedicated people determined to improve the lives of people suffering with ME/CFS. The organization is the best hope of patients and their friends and families for getting a cure and stopping the suffering.
I learned about SCMI (formerly the CFIDS Assoc. of America) in 2011 when I got back in touch with a good friend from college and learned that she was (and is now again) a member of its board of directors and that her daughter has suffered from ME/CFI for many years. This personal connection led me to take a closer look at this disease and to appreciate how debilitating it can be and how much needs to be done to be able to treat it effectively. I am very impressed by the cost-effective and focused strategy that SCMI is taking to fund research to find a cure for ME/CFI and for this reason I have been making significant donations to them over the past four years.
After coming down with CFS two years ago, finding the web site for CFIDS Association of America (now Solve ME/CFS Initiative) was a godsend. It has been the best clearing house of reliable information. The organization continuously posts abstracts of recently published research articles. It raises money to provide seed money for new research initiatives, many of which have gone on to land more substantial grants from government funding agencies. This fall, some of these funded researchers have been giving webinars on their work, webinars organized by the Solve ME/CFS Initiative. The non-profit maintains a "Biobank" of frozen blood and cells from CFS sufferers as well as controls that researchers can apply to use, simplifying their search for samples for their research. It also keeps us informed of relevant conferences and meetings held by the FDA and the IOM so that we can tune in via the web. As a PhD in biology with years of research and teaching under my belt, I greatly appreciate what this organization does, value the quality of information it provides, and hope that its interaction with government agencies results in increased funding for research on this mysterious and debilitating syndrome. I, as well as members of my extended family, eagerly donate to help their efforts.
1 person found this review helpful
My sister has struggled with CFIDS for more years than I can count and has flown all over the United States trying to get the optimum treatment. I have watched how this disease has impacted her. She talks about this organization and all that it has done for her in finding information so that she can understand what is going on with her and help to find ways to make her family understand as well.
Keep up the good work!
Abby Eibel, MA.Ed, LPC/MHSP
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.
If I had to make changes to this organization, I would...
give it a bigger budget.
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