ME Research UK report: CDC Grand Round presentation, 23 Feb 2016

The Centers for Disease Control and Prevention (CDC) in the US hosts regular ‘Public Health Grand Rounds’, which focus on particular topics of interest. Last week, the topic was ME/CFS for a session entitled, “Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education”

The one-hour session involved an expert panel of well-known clinician–researchers who discussed how they approach diagnosis and treatment; how the diagnostic criteria for ME/CFS have changed over the year; and how the public health community can improve its knowledge and understanding of the illness. The specific talks were:

• Clinical presentation of chronic fatigue syndrome; Dr Charles Lapp (Hunter-Hopkins Center, North Carolina)
• Public health approach to chronic fatigue syndrome: Dr Elizabeth Unger (National Center for Emerging and Zoonotic Infectious Diseases, CDC)
• Lessons from the Institute of Medicine and NIH Pathways to Prevention reports: Prof Anthony Komaroff (Harvard Medical School & Brigham and Women’s Hospital)
• Post-infectious chronic fatigue syndrome, intramural research at the National Institutes of Health; Dr Avindra Nath (National Institute of Neurological Diseases and Stroke)

The talks can be seen on on youtube or at the  CDC Grand Rounds page which also has the informative slides from all the talks as a pdf file.

As an adjunct to the Grand Round presentations, there was a short 12-minute interview with Dr Anthony Komaroff (below) in the ‘Beyond the Data’ series, which discussed key aspects arising from the meeting, including biomedical findings.

Dr Komaroff explained that ME/CFS has some cardinal features (post-exertional malaise, orthostatic intolerance, cognitive problems and problems with sleep, etc), and that the majority of cases are preceded by an infection from which patients never fully recover. He mentioned the abnormalities that research has uncovered – including central and autonomic nervous system, immune and energy metabolism abnormalities – albeit that the illness still lacks sensitive pathological gold-standard markers for definitive diagnosis.

He was involved in the creation of the name ‘CFS’ in the 1980s, but recognises now that the name was a mistake, as it trivialises and stigmatises the illness. His own presentation had been on the Institute of Medicine and NIH Pathways to Prevention reports on ME/CFS published in 2015 (read our summary) , and he is positive and optimistic about what they might herald, though it remains to be seen if the new name proposed for ME/CFS (SEID) will be accepted and adopted by researchers, clinicians and patients.