“More” was definitively in store at the International Association of Chronic Fatigue Syndrome (IACFS) conference held in Fort Lauderdale, Florida, January 10-14. The conference—consisting of a two-day patient conference and a three-day professional conference—featured more presentations, greater convergence of scientific exploration and findings, broader international participation and more people in attendance, especially from the medical and research community.
The Patient Conference
The first day of the patient conference featured training on advocacy and leadership, and living with CFS. In the advocacy training, participants learned how to communicate with state and federal representatives as well as the media. The other sessions shared information particularly helpful to people newly diagnosed with CFS, including basics about technology, disability, employment and pain management.
The second day branched out to cover a variety of topics. CFS experts presented research and treatment updates. Leonard Jason, PhD, and physicians David Bell and Charles Lapp discussed a new case definition for pediatric CFS and answered questions about caring for a young person with the illness. There were also sessions on managing quality of life with CFS and/or fibromyalgia and multiple chemical sensitivities.
The Professional Conference
The professional conference consisted of presentations and workshops from CFS research teams worldwide and leading CFS clinicians. A record number of papers were submitted to the IACFS for presentation and the resulting sessions covered fatigue, sleep, clinical trials, pain, epidemiology, international research, brain function, behavioral health, pediatrics, gender aspects, viral and immune interactions, genetics/proteomics and new methods for evaluating fatigue.
Perhaps one of the most striking elements other than the sheer number of research presentations was the budding convergence of findings (see this month’s “From the Desk of Kim McCleary”) around brain function and traits, mitochondrial dysfunction and oxidative stress, molecular biomarkers, virology and epidemiology. As scientists and clinicians shared their work, many of the findings echoed similar themes.
For example, diverse studies using brain imaging and cognitive testing, exercise testing, genomic analysis, spinal fluid protein and cardio monitoring have all uncovered indications of oxidative stress and/or mitochondrial dysfunction in CFS. The mitochondria are involved in energy conversion at the cellular level. Oxidative stress is a form of cellular damage that can impede the cell’s function and even lead to cell death. While not necessarily indicative of a direct cause of CFS, these findings shed light on one way CFS might be affecting the body and its ability to convert energy.
Major talks during the three days of back-to-back presentations included the latest research providing more evidence that cognitive processing differs in CFS patients compared to controls, data on distinctive chemical and molecular differences in CFS, the role of specific viral agents in the illness and confirmation that differences in gene expression exist in CFS patients and from one subgroup of patients to another
Overall, an impressive quantity and scope of information was presented—a testament to the widespread international participation at this event. And with 221 medical and research professionals and 169 CFS patients and family members in one room, future support and collaboration is bound to emerge. As always, we’ll keep you posted.