#MEAction launches campaign to educate healthcare providers about Myalgic Encephalomyelitis

Written by

–

May 14, 2024

A photo of Jaime Seltzer, courtesy of #MEAction

#MEAction, the nonprofit organization advocating for people with myalgic encephalomyelitis (ME), has launched a campaign to educate healthcare providers about the disease, collaborating with medical schools across the U.S. The education campaign, called “Teach ME, Treat ME,” kicked off last week in time with #MillionsMissing 2024, an outreach event for ME that takes place in May each year.

The new campaign aims to address a gap in medical education: most providers do not learn about this disease — which has become more prevalent in recent years, as many people with Long Covid are also diagnosed with ME — during their training. #MEAction is hosting educational events with 13 organizations across the U.S. this spring and starting closer collaborations with five institutions to develop training programs.

To Jaime Seltzer, #MEAction’s scientific director, the collaborations with established medical institutions signify how far ME outreach has come in recent years. This type of work is very different from “what might have been able to happen five years ago, ten years ago,” she told The Sick Times.

The Covid-19 pandemic has contributed to raising ME’s public profile; some research suggests about half of people with Long Covid meet the diagnostic criteria for ME, leading this patient population to grow significantly and increasing the demand for medical providers with expertise in this disease. But the path to “Teach ME, Treat Me” actually started years earlier, Seltzer said, pointing to milestones such as a 2015 report from the Institute of Medicine and the 2017 film “Unrest” by Jennifer Brea, which won an award at the Sundance film festival.

Map of Teach ME, Treat ME events, courtesy of #MEAction

In another sign of ME’s growing recognition in the health and medical communities, Seltzer was recently recognized by TIME Magazine as an honoree of TIME100 Health, a list of the “most influential people” in global health this year. The list also includes leading Long Covid researchers Akiko Iwasaki and Ziyad Al-Aly, as well as physician and science communicator Eric Topol.

The “Teach ME, Treat ME” campaign aims to translate this broader recognition into educational materials for healthcare providers and medical students, Seltzer said. While demand grows for providers who can treat the growing number of people with Long Covid, many of these healthcare workers — including many of those working at dedicated Long Covid clinics — are not familiar with ME’s complex symptoms and strategies that can help manage them, such as pacing.

In the campaign, #MEAction is collaborating on educational events with 13 medical institutions and organizations, including Brown University’s Warren Alpert Medical School, the Mayo Clinic, Emory School of Nursing, and One Medical. (Find the full list of events below.) #MEAction is also starting closer collaborations with researchers at Georgetown, Emory, and Brown Universities, Mayo Clinic, and the University of Montreal to develop educational materials and foster more in-depth expertise in ME at these institutions.

“By engaging with each of these universities and healthcare systems one-on-one, they end up feeling a sense of ownership of the material because they will have helped to produce it,” Seltzer said. These institutions can then share the educational materials with their students as well as other organizations interested in learning about ME. The model is similar to the federal government’s program supporting select Long Covid clinics that will provide education and guidance to other healthcare providers.

Using a social media hashtag supporting the campaign, people with ME shared how more widespread medical education would have made a difference in their patient journeys. “It took 5 years for me to be diagnosed — the most terrifying 5 years of my life… Every medical school must teach about this disease,” advocate Wilhelmina Jenkins wrote on Twitter/X.

Support independent Long COVID journalism

List of events: