Since our inception in 1997, the National CFIDS Foundation has focused primarily on the scientific aspects of this disease which is known by several names, that include CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), CFS (Chronic Fatigue Syndrome), and ME (Myalgic Encephalomyelitis).
Through the kind donations from patients, families, researchers and medical professionals, we have raised $5 million dollars to date, which has been used to fund dozens of global scientists in a coordinated effort to get to the "meat and potatoes" of CFIDS as a disease process.
What evolved has been a massive effort to gain understanding of the key underpinnings of the actual process itself. Through scientific research efforts and subsequent medical discoveries, we have learned about and classified our own NCF patient cohort as having internal alpha-radiation exposure, most likely via ingestion or inhalation of alpha-particles. This would further allow for a patient cohort that implicates environmental contamination as the primary source of exposure. In the literature, this would likely classify our cohort as people with chronic radiation sickness. Our disease model highlights the importance of melanoma and hematopoietic dysregulation in CFIDS.
So, here we are. Twenty-seven years of dedication, determination and desire to make a difference to the global patient community. You answered with your generosity which has truly allowed us to, "Help us help you!"
Were we good stewards of your gifts? We certainly hope so. Unlike many other organizations, we like to consider ourselves a true charity... One where roughly all donations have gone to fund research! No one gets paid here. Everyone gives of their time and talents in an effort to uncover more answers. Most of us here have CFIDS and so we know first-hand how brutal it can really be! We are proud of the work that we have completed to date and we are grateful to the many scientists who take the time to listen, read, ponder and respond with the hope that they too, can make a difference to add to our understanding.
With our new website, we will be adding more varied content, including videos aimed at discussing both our own research as well as research by other scientists who may be unaware that their discoveries may fit into our evolving disease model. We believe that by sharing this knowledge more openly, without always looking at peer review publishing as an endpoint, that this will not only lead to greater knowledge about CFIDS as a disease but will also propel us forward towards much needed and long overdue targeted treatments.
