We were thrilled at the outcome of the #MEAction press briefing last week where we invited a panel of experts to discuss the intersection between long COVID and myalgic encephalomyelitis (ME) to the media. The panelists made it crystal clear that a subset of long haulers are meeting the criteria for ME, and that it is imperative that the NIH research ME/CFS alongside long COVID in order to best understand both conditions.
We had an excellent turn-out with journalists attending from major press outlets, and more requesting a recording of the event. Journalists attended from The New York Times, Fox News, NBC, CNN, Chicago Tribune, Nature, Scientific American, US News & World Report, Medscape, Future Medicine, Women’s Health UK, Mercury News, Fast Company, Luzerner Zeitung from Switzerland and Carte Blanche from South Africa!
Watch our highlight reel of the press conference below. Or, watch a recording of the full, hour-long event here.
The goal of our press briefing was to make it clear to the media that chronic illness following viral outbreaks is not a new phenomenon, and that ME has followed this trajectory for decades. We also wanted to impress upon journalists that a body of research and patient experience already exists around post-viral illness, which long COVID clinics need to pay attention to. Most importantly, we wanted to make it clear to the media that there is a community of people who have been dealing with this sort of post-viral illness for decades, that we exist and have been fighting for our lives, and that ME must be included in the long COVID research in order to fully understand and treat both long COVID and ME.
The Panelists Made the Case for Researching long COVID and ME Together
In this context, Dr. Lucinda Bateman, MD, founder and medical director of the Bateman Horne Center, provided an overview of ME, explained the overlapping symptoms between long COVID and ME, and described how 10 of the 12 long haulers she met at the Bateman Horne Center met the criteria for ME.
Dr. Anthony Komaroff, MD, who has researched ME for the past 30 years and is a distinguished professor at Harvard Medical School, explained how there is established evidence for viral outbreaks leading to chronic illness and ME/CFS, and explained his estimate that ME/CFS will double in the course of year during the COVID-19 pandemic.
Dr. Avindra Nath, MD, explained how research into ME/CFS and long COVID at the U.S. National Institutes of Health are informing one another. Dr. Nath is the intramural Clinical Director at the National Institute of Neurological Disorders and Stroke (NINDS). He is the lead investigator for the NIH intramural post-infectious ME/CFS study, and has recently launched two intramural studies to investigate long COVID – one on the natural history of COVID recovery and another one that will focus more specifically on characterizing COVID-related neurologic sequelae.
Jen is a RN who got COVID-19 in March of last year while living in Seattle, and has not recovered, and is showing symptoms of ME.
Ashanti Daniel is a RN living in Los Angeles who got enterovirus in 2016, and has never recovered. She has spent the past 5 years advocating for change.
A Culmination of Our Press Work
Since the beginning of the pandemic, #MEAction has been reaching out to every single journalist reporting on long COVID to educate them about the millions who developed ME following an infection, and how we’re beginning to see long haulers report symptoms of ME, including fatigue, post-exertional malaise and cognitive dysfunction. We are emailing as many as 5-6 journalists a day, and have seen results as reporters contact us for stories, and include ME/CFS in their reporting on long COVID!
We are also contacting clinicians who are quoted in the press on long COVID, many of whom are emphasizing physical rehabilitation, to encourage them to recognize patients showing ME symptoms, and to not subject them to treatments that may worsen their health, like graded exercise therapy. (A huge shout-out to ME advocate, Timbre, for her daily work in making this communication happen!)
We know that advocacy leads to research funding– and educating the general public, motivating those in power, and reaching clinicians is all a part of the work that will lead to tangible results. We do not take this responsibility lightly and it is why we are dedicating so many hours and resources to making sure our press outreach has a huge impact.
Will you help us keep this work going? Your contribution to #MEAction will allow us to keep up and expand our robust efforts and yield results that are changing hearts and minds- and even the opinions of experts on what needs to be done for research for people with ME.
Donate here: https://www.meaction.net/donate