The CFIDS Association of America, Inc.
Rating: 4.09 stars 80 80 reviews 1,384
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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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.
We are family members of someone with ME/CFS and are impressed with the Research Without Walls program that we had the opportunity to learn about recently in Washington DC. The effort and expertise of those involved are moving toward answers for this mystifying and debilitating condition.
We are very impressed with this organization's wise use of funds that are donated to them. Their actions support a resolve to use the money in the smartest way possible to understand ME/CFS and contribute to medical advances that we can hope will one day lead to a cure.
Chronic Fatigue can be a devastating illness for patient's and their families. The Solve ME/CFS Initiative has offered real hope that lives can restored.
Chronic Fatigue is a serious problem with many people today. The research that SMCI is doing is helping people have normal lives again. The more information we have the faster this can be solved. My family has directly benefited from the assistance and will support SMCI.
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
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.
As a psychologist, I have experienced clinical research funding and clinical trials with patients. What impresses me about the research approach of the Solve ME/CFS Initiative is the wise use of contributions and funding sources in cost effective ways to get the most value and use in developing research projects from the funds available to them. To re-purpose the use of existing drugs that might be helpful in treating those with CFS has been a fairly novel, cost savings and common sense approach in the search for cures for ME/CFS. This is an important model for drug testing that can hopefully pinpoint more accurately and quickly drugs of potential benefit for symptom relief to a suffering population that is surely in need of symptom relief and return to normal living. Witnessing the struggles of families with a loved one stricken with ME/CFS demonstrates the courage, fortitude, and quiet perseverance of those who face each day with great effort and determination. Because symptoms are often invisible to the casual observer, the debilitating effects of this ailment are often overlooked or unfairly minimized. It is my belief that the ME/CFS Initiative offers real hope through effective research to a population much in need of relief. I am proud to give financial support the efforts of this organization.
I'm committed to this organization because it is our best hope for solving this devastating illness. The staff are committed professionals and the board are highly capable and knowledgeable. I fully support their work.
I could write a soliloquy for this review...
Simply put.. They give me hope.
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1 person found this review helpful
After my sister was diagnosed with ME/CFS, i went looking for organizations that were working to solve the mystery that is this disease. I was surprised at how little awareness there was of the disease, but was very excited to find the Solve ME/CFS initiative (CAA at the time) and to see that they were working hard to meet their mission of making ME/CFS understood, diagnosable, and treatable. What really sets SMCI apart from other organizations i've worked with is the laser focus SMCI has on leveraging patient centered research to find a cure. I'm honored to serve on the board of this amazing organization working to make my sister's and a million other people in North America's lives better.