Terri Wilder became dreadfully ill in 2014, falling asleep immediately each day after she got home from work and laying in bed all weekend, recovering just enough to drag herself to work the next week.
“I could barely raise my hand to hail a cab,” she said.
After nearly two years, Wilder was diagnosed with a disease called myalgic encephalomyelitis, also called chronic fatigue syndrome, a neuroimmune condition with symptoms including brain fog, severe fatigue, pain, immune aberrations and post-exertional malaise.
She had worked for decades as a social worker and activist for marginalized communities, focusing on HIV research and education programs and LGBTQ health. Wilder was shocked to find that ME/CFS lacked a drug approved by the Food and Drug Administration, and scientists studying the disease only received about $5 million annually in research funding from the National Institutes of Health.
At that point, she found herself in an altogether new marginalized disease community, reminiscent of the stigmatized groups she fought for at the height of the AIDS epidemic in the 1980s.
A chronic disease, ME/CFS can last for decades. It often takes root following some form of viral infection, for instance Epstein-Barr virus or Ross River virus. The novel coronavirus is just one more virus that can potentially trigger the onset of this debilitating condition.
Wilder fears that hundreds of thousands of people with Covid-19 could develop the same illness plaguing her. And leading medical experts have the same concern.
“Even after you clear the virus, there are post-viral symptoms. I know, because I follow on the phone a lot of people who call me up and talk about their course,” said Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, in a July 17 interview with Medscape.
“It’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.”
Many are falling ill and staying ill
More than six months into the global coronavirus crisis, many who contract Covid-19 are not fully recovering.
Up to 35% of those diagnosed with Covid-19 were not back to their normal selves two to three weeks after testing positive for the coronavirus, according to a July 24 report by the US Centers for Disease Control and Prevention.
Of the 292 people the CDC surveyed on post-Covid recoveries, those recovering from Covid-19 reported a median of seven of the CDC’s 17 symptoms.
Thirty-five percent reported fatigue. And one in five younger people ages 18 to 34 without any other chronic medical conditions reported they had not fully recovered.
One of those still struggling with symptoms months later is CNN anchor Chris Cuomo, who first announced that he tested positive for the coronavirus on March 31.
Speaking on his show on July 14, he noted that myalgic encephalomyelitis had been suggested to him as a reason why he hasn’t fully recovered.
“I’ve got brain fog that won’t go away,” Cuomo said. “I’ve got an onset of clinical depression, which is not sadness. People keep saying to me, ‘Don’t be sad.’ I’m not sad. I’m depressed. It’s different. I can’t control it.”
Cuomo has regularly talked on air about his battle with Covid-19, and he’s conversed with viewers on Twitter about his journey, many of whom say their Covid-19 symptoms are lingering, too.
“I can’t recover from workouts the way I did before,” he continued.
Failure to recover from exercise, or post-exertional malaise, is often considered a hallmark ME/CFS symptom, according to a 2015 report by the National Academy of Medicine. That report also estimated that 836,000 to 2.5 million Americans suffer from ME/CFS, although most are not diagnosed.
At present, ME/CFS is estimated to have a $17 billion to $24 billion impact on the US economy, based on medical bills and patients’ lost income due to many being unable to work, according to the CDC.
If you have chronic Covid-19, it’s important to rest
Living with ME/CFS, seeing Covid-19 pillage her city and reading press reports of Covid-19 patients not recovering has left Wilder on edge.
She has been using all her connections from her career in public health to help raise the alarm about chronic symptoms that so-called Covid “long-haulers” are likely to face for months or years to come.
On Friday, Wilder is facilitating a webinar for people facing the lingering effects of Covid-19. That event, in collaboration with the Myalgic Encephalomyelitis Action Network, sold out quickly with minimal advertising, showing her that there’s likely a big need for the information she and ME/CFS clinicians are providing.
“The first thing that terrifies me is ‘Don’t exercise.’ You can make yourself sicker,” Wilder said. “This is something that everyone with ME wishes that somebody had told them in advance. We don’t want people to go through the things that we did.”
Those with ME/CFS should prioritize activity management, or pacing, the CDC recommends. This means you should understand your physical and cognitive limits, and not push beyond them, as this will result in a crash, setting you back on your recovery. “Some patients and doctors refer to staying within these limits as staying within the ‘energy envelope,’” the agency said.
Researchers are monitoring how patients’ symptoms progress
A number of research and support groups are setting up to help people struggling with long-term Covid-19 symptoms and to explore how and why immune system abnormalities might lead to ME/CFS.
More than 14,000 people have joined an online Covid-19 support group on the website of Body Politic, which describes itself as a queer feminist health collective and media company. The community offers insights for those who have tested positive, are experiencing symptoms or are recovering from Covid-19. And it contains special sections for those whose Covid symptoms have lasted beyond 30 or 90 days.
Members of Congress are taking notice as well.
Democratic Rep. Jamie Raskin of Maryland is co-sponsoring a bill, HR 7057, the “Understanding Covid-19 Subsets and ME/CFS Act.” The proposed legislation calls for $60 million in federal funding, or $15 million annually through 2024, for projects including data collection, collaborative research centers and a medical research program to be executed by the National Institutes of Health and the US Department of Veterans Affairs.
One of the groups that would likely vie for additional federal resources is the Open Medicine Foundation, a collaborative of scientists focusing on ME/CFS research with centers at Stanford University and Harvard University.
The group launched a study of Covid-19 patients that will monitor how their disease and its possible aftereffects, specifically chronic conditions that might occur after an illness, evolve. The researchers will analyze patients’ genomes, as well as complete protein and metabolism profiles at regular intervals.
“Covid-19 gives us an unprecedented opportunity to advance our understanding of post-viral disease,” said Dr. Ami Mac, the director of translational medicine at the Stanford Genome Technology Center, which is associated with the OMF.
“This could result in a longstanding public health disaster leaving in its wake untold numbers of new sufferers of a condition that feels like a ‘living death’ for those of us afflicted,” Mac, who has ME/CFS, said.
In the next couple weeks, she hopes to finish building an app by which researchers can follow Covid-19 patients and the symptoms, tracking how and when they develop symptoms consistent with ME/CFS.
“We plan to obtain blood samples over a few years longitudinally to allow us to see which molecular changes occur that prevent resolution of symptoms,” she said.
Both Mac and Wilder plan to keep dedicating themselves as strong advocates for Covid-19 long-haulers who need all the support, scientifically and socially, that they can get.
One way Wilder did that was by asking Fauci a question about ME/CFS and Covid-19 at a July 9 news conference organized by the International AIDS Society.
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Fauci’s acknowledgement of the link garnered international headlines, and afterwards he went on to compare the two conditions publicly on at least two other occasions last month.
“Because of my HIV background and my knowledge of social activist groups like Act Up, I just quickly realized we have to work together and I have to take advantage of every opportunity available to me,” Wilder said.
Correction: A previous version of this story indicated the incorrect state that Rep. Jamie Raskin represents in Congress.