- Last Updated: 12 May 2020 12 May 2020
Some post-COVID patients are not recovering as expected, and researchers are predicting the pandemic will lead to a surge in long-term chronic illness, including an uptick in cases of myalgic encephalomyelitis (ME - also known as chronic fatigue syndrome or ME/CFS), a debilitating illness that affects more than 1 million Americans.
On May 12th, #MEAction will hold a global online #MillionsMissing demonstration calling for governments to urgently respond to prepare for this impending crisis. A large body of research shows that long-term illness and disability can be triggered by viral infections, like COVID-19. Up to 80% of cases of ME are initiated by a viral infection. “Coronavirus leading to more cases of ME will happen for sure, unfortunately,” said Dr. Alain Moreau of Université de Montréal, Montréal, Québec. “We need to be ready for the next wave.”
Natick resident Cecilia Arce Carrera, mother to recently-diagnosed patient Claudia Carrera, said, "It's been devastating to watch my daughter have her life taken from her. She is not only incredibly talented but a very giving person, dedicated to effecting change in the world. After struggling with undiagnosed symptoms for years, she has had to leave her life and work in NYC and move back home to be cared for. Now, at a time when her sisters and friends are starting families and achieving career milestones, she is stuck in bed with no treatment and no future.”
Studies show that when a severe infection sweeps through the population, ME will often follow.
Studies have shown that symptoms common in ME frequently occur long term in people who contracted at least two previous coronaviruses, SARS and Middle East Respiratory Syndrome (MERS). Likewise, this study on Epstein-Barr virus, Q Fever, and Ross River virus showed that 11% of subjects across the board met ME/CFS criteria at 6 months after clearing the infection, and another study of people with mononucleosis (Epstein-Barr virus) produced similar numbers. 20% of patients with West Nile Virus met the criteria for ME/CFS six months after tests first returned negative for West Nile, according to this study.
In addition, COVID-19 is hitting racial and ethnic minorities and those of low socioeconomic status the hardest; yet this demographic is also the least likely to be diagnosed with ME even where they meet the diagnostic criteria. The crisis of care will be magnified in these communities.
“We are not out of the woods, but we also need to be ready for what is coming next,” said Moreau.
Read more about the potential for COVID-19 to cause chronic illness, including ME: https://www.meaction.net/2020/05/10/researchers-expect-covid-19-will-cause-surge-of-chronic-illness-including-me/
#MillionsMissing is an international movement fighting for equality for people with ME,spearheaded by #MEAction. This is our fifth global #MillionsMissing demonstration.
#MEAction is an international network of patients and allies empowering each other to fight for health equality for ME.
The Massachusetts ME/CFS & FM Association supports people with ME/CFS and fibromyalgia, and their families, in Massachusetts and New England. https://www.massmecfs.org/
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.