Engaged Patients

Long COVID and ME/CFS – Engaged Patient Communities With Shared Interests

Editor’s note: A new report issued in November by the U.S. Department of Health & Human Services provides an in-depth view of Long COVID based on the experience and knowledge of patients and very much in keeping with this earlier post. The report explores the varied impact of Long COVID on individual lives, including the disproportionate effects of the condition depending on patients’ circumstances and environment — the “social determinants of health.”  A news release says the research focused on  “elevating what is often underrepresented in Long COVID statistics, scientific literature, and policy making—the narratives and expertise of people with Long COVID and what they want and need to live better, healthier lives.”
     The report was developed by Conforma’s Health+, a program that applies human-centered design to pressing healthcare challenges. An earlier Health+ report developed for HHS focused on Lyme disease.

As recent episode of the Freakonomics M.D. podcast offers an update about the relationship between Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), debilitating conditions that share super-engaged patient populations as well as symptoms.

Bapu Jena, M.D., Ph.D., host of Freakonomics M.D., says ME/CFS first gained attention in the mid-1980s. Since then, the condition and patients living with the cluster of symptoms that define it have often been stigmatized, judged to be suffering from largely psychosomatic symptoms. People with an interest in ME/CFS are hoping that the large wave of people with Long COVID – as unfortunate as that is – will prompt research that will also advance diagnosis, treatment and prevention of both conditions.

Photo by Jeremy Bishop, Pexels.com

I learned about the connections between Long Covid and ME/CFS when I talked with Jaime Seltzer following her keynote address at the 2021 annual meeting of the Society to Improve Diagnosis in Medicine (the resulting interview is available here). Seltzer, who was diagnosed with ME/CFS in 2015, is Director of Scientific and Medical Outreach at #MEAction, an international nonprofit focused on education, research and advocacy for people with ME/CFS. She also consults on several research projects at Stanford University, including some led by Professor Ronald Davis, Ph.D., an ME/CFS expert interviewed by Jena for Freakonomics, M.D.

I had read that Seltzer and some of her Stanford Colleagues anticipated it might take a pandemic for ME/CFS to be taken seriously and asked her about that. She replied:

Yes, that hypothesis about a pandemic was mentioned in a Time magazine article published in October 2020. Having had difficulty gaining adequate support for our work, we wondered out loud what it would take for ME/CFS to be taken seriously by our funding agencies, and Ron said, “Well, it would take a pandemic.”

As I mentioned above, people with an interest in Long COVID and ME/CFS – patients, family members, clinicians, researchers and more – have developed highly engaged communities for support and advocacy. They are two distinct groups with overlapping, occasionally competing interests, but together they are advancing mutually advantageous social action, support and science.

Both communities have supplied first-person reporting of symptoms and responses to treatment that provided the first evidence that there was a problem and continue to drive much of the research. Both conditions lack objective diagnostic testing, so physicians rely on patients and their caregivers to describe their experience. Engagement is key!

For further reading, the Freakonomics, M.D., webpage for the episode offers a lengthy resource list

New Study on Long COVID Is Based on Patient Reporting is an Engaging Patients post from April 2021

Long COVID Gains Acceptance as Many Questions Remain Unanswered is an article I wrote for ImpoveDx, digital newsletter of the Society to Improve Diagnosis in Medicine, in January 2021

Follow Jaime Seltzer on Twitter


Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 185 post(s) at EngagingPatients.org

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