#12. "Chronic Overlapping Pain Conditions" in ME/CFS, new insights with the C.D.C’s Dr Elizabeth Unger, Yang Chen & Elizabeth Fall

Make Visible: Understanding Complex Illness

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The U.S.A.’s Centre for Disease Control (C.D.C) ME/CFS program has been working for decades to deepen our understanding of the condition. Their Multi-site Clinical Assessment of ME/CFS (MCAM) study, conducted across seven specialized clinics in the U.S. from 2012 to 2020, provides valuable data that forms the foundation for ongoing research.

Dr Elizabeth Unger, chief of Chronic Viral Diseases Branch, and epidemiologists Yang Chen and Elizabeth Fall, have contributed to numerous studies exploring various aspects of ME/CFS, from cognitive impacts to looking for biomarkers. In this episode, we focus on their latest paper, which examines the prevalence of Chronic Overlapping Pain Conditions (COPCs) that occur in ME/CFS.

Three-quarters of ME/CFS patients suffer from COPCs (defined as: Chronic low back pain; Chronic migraine/Headache; Fibromyaligia; Endometriosis; Interstitial cystitis/Irritable bladder; Irritable bowel syndrome (IBS); Temporomandibular disorder (TMD); Vulvodynia) with women being more likely to experience at least one of these co-occurring conditions. The understanding of why these are so prevalent in ME/CFS is the next piece of the puzzle.

A large portion of this team’s work is educating patients and carers along with healthcare workers. They are immensely proud of their resources such as their patient tool kit, management strategies and disability advice, tailored to helping patients advocate for themselves and their family members to receive appropriate diagnosis, treatment and care. Sitting alongside this is a section for healthcare providers where they present a clinical overview to assist in the diagnosis and care, with a toolkit containing many educational and reference resources.

The MCAM data and biospecimens are also available (via application) to other investigators to maximise the impact of this longitudinal study.

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