Dr. Elizabeth Unger of the Centers for Disease Control and Prevention provided an update on the CDC’s work on ME/CFS during a one-hour public conference call Oct. 8.
In the call, Dr. Unger reported that the CDC just awarded contracts to continue the Multi-Site Clinical Assessment of CFS study for another year. Unger said that the seven clinicians and their study coordinators will convene on the CDC campus in December to review progress, exchange ideas and make plans for future work. The study, which uses a standardized approach for collecting information on the major illness domains of CFS from patients in the seven clinics, has four stages. Stage 1, which began in 2012 and includes data on 471 patients, is complete, and the results are being prepared for publication.
Stage 2 looks at three additional objectives: 1) a follow-up of patients in Stage 1 along with enrollment of healthy control and patients ill with conditions that may resemble CFS; 2) the investigation of pediatric and adolescent patients, which began in September 2013 and continues; and 3) the measurement of cognitive function, exercise capacity and the impact of exercise on cognition and symptoms, which began in March 2014 and is still enrolling.
Stage 3 of the study includes the addition of house-bound patients and patients who have had the disease for less than two years, as well as healthy and ill comparison groups in the combined cognition and exercise protocol. The Stage 3 protocol also includes collection of blood samples to test Natural Killer (NK) cell number and function and to provide stored serum and plasma. The sample collections for the NK cell pilot testing have been completed, and the CDC will discuss the findings with clinicians in the next several months.
Stage 4 of the study will repeat the data collection in Stage 3 and will also collect information on autonomic symptoms and orthostatic intolerance. Stage 4 has not yet begun.
Unger also offered updates on the CDC’s educational efforts. She said that the first two education modules on the ME/CFS education component for medical schools have been cleared by the CDC and were recently submitted to MedEd Portal for peer review. Once the modules are published, medical school professors and other health care educators will have access to the materials.
Unger announced that ME/CFS will be included in the CDC Public Health Grand Rounds in February 2016. The Grand Round webcasts summarize current knowledge, highlight how CDC and its partners are addressing challenges and provide recommendations for the future. The process for a topic to be included in the Grand Rounds is highly competitive; health care professionals worldwide view and reference them in their work. “Selection of CFS/ME for a Public Health Grand Rounds reflects the continuing recognition of how important CFS/ME is to public health and will build upon the strong message the IOM provided to the health care community about this illness,” Unger said.
Finally, Unger said that the CDC recently awarded a contract to create a partnership with various stakeholders to help them revise educational materials incorporating the Institute of Medicine recommendations and to make related changes to the CDC website.