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The Chronic Fatigue Initiative (CFI), the Foundation’s first project, embarked on the first scientifically rigorous and statistically significant wide-scale research into the underlying infectious, immunological, and toxicological causes of Chronic Fatigue Syndrome (CFS). It provided a forum for clinicians and laboratory-based investigators to meet and collaborate, and the resources needed to collect samples for rigorous analysis. These samples continue to enable cutting-edge research.
Previously, CFS had attracted little to no resources for basic research and was overlooked by the traditional medical school, hospital, and pharmaceutical research communities, presenting a unique opportunity for the Hutchins Family Foundation to focus intensely on this issue. The Foundation illuminated the path and created essential tools for researchers to follow the science.
After thorough review, the Foundation concluded that the fastest, most cost-effective approach was to build its own de novo medical research initiative: CFI. CFI recruited over 400 patients to create the largest and most varied database of biological and statistical information for investigating viral, immunological, and bacterial causes. Using the samples and data from this initiative, CFI-funded investigators discovered an immune system “signature” in the blood (IL-17) and spinal fluid of CFS patients, proving that the illness had a biological basis. Almost half of the 50+ immune factors tested in cerebrospinal fluid were significantly different in CFS patients compared to healthy controls. These findings provided the scientific backing for a 15-member Institute of Medicine (IOM) panel to conclude that CFS is a physical illness, not a psychological disorder. CFI’s work also redefined the diagnosis of CFS to reflect the prevalence and severity of three symptoms: pain, impaired memory, and post-exercise malaise.
CFI researchers made discoveries about the absence of disease-causing mitochondrial DNA mutations in CFS patients and the chemistry of energy production inside the mitochondria. Research continued on immune markers in patients with allergies, cytokine differences in cerebrospinal fluid, and chemokine dysregulation in patients with “brain fog.” Additionally, the foundation’s continued funding supported an epigenetic study, a microbiome study, and longitudinal immuno-phenotyping, with promising preliminary findings.
As a result, the diagnosis of CFS can now be based on clinical criteria, offering hope for both diagnostic tests and therapies. As the causes of the illness were uncovered, the Foundation disseminated its findings to equip the broader research community to work on the disease’s mechanism, treatment, and prevention.
The Chronic Fatigue Initiative data and research materials were handed over to the National Institutes of Health (NIH) to continue pioneering research and further the understanding and treatment of Chronic Fatigue Syndrome and other immunological conditions such as Long COVID.