(CNN) – Terri Wilder became seriously ill in 2014, falling asleep every day as soon as she got home from work and staying in bed all weekend, recovering just enough to drag herself to work the following week.
“I could barely raise my hand to hail a taxi,” he said.
After nearly two years, Wilder was diagnosed with a disease called myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME / CFS), a neuroimmune condition with symptoms including mental confusion, severe fatigue, pain, immune aberrations, and post-exercise malaise.
She had worked for decades as a social worker and activist for underserved communities, focusing on HIV education and research programs and LGBTQ health. Wilder was surprised to discover that there was a drug approved by the Drug Administration Food and US (FDA, for its acronym in English) for this syndrome and scientists studying the disease only received about 5 million annually in research funds from the National Institutes of Health.
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At that point, she found herself part of a community of people with an entirely new marginalized disease, reminiscent of the stigmatized groups she fought for at the height of the AIDS epidemic in the 1980s.
As a chronic disease, ME / CFS can last for decades. It often takes hold after some form of viral infection, for example the Epstein-Barr virus or the Ross River virus. The new 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 disease that afflicts him. And leading medical experts have the same concern.
Even after eliminating the virus, there are post-viral symptoms. I know this because I follow a lot of people on the phone who call me and talk about the course of their illness, “said Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, in a July 17 interview with Medscape .
Many fall ill and then remain ill
More than six months after the start of the global coronavirus crisis, many of those who contract COVID-19 are not making a full recovery.
Up to 35% of those diagnosed with COVID-19 did not return to normal two to three weeks after testing positive for coronavirus, according to a July 24 report from the US Centers for Disease Control and Prevention ( CDC for its acronym in English).
Of the 292 people the CDC surveyed about their recovery processes, those who recovered from COVID-19 reported, on average, seven of the CDC’s 17 symptoms.
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35% reported fatigue. And one in five people ages 18 to 34 with no other chronic medical conditions reported that they had not fully recovered.
One of those still struggling with symptoms months later is CNN host Chris Cuomo, who first announced that he tested positive for coronavirus on March 31.
During his show on July 14, Cuomo noted that he had been suggested myalgic encephalomyelitis as a reason he has not made a full recovery.
“I have a mental confusion that won’t go away,” Cuomo said. «I have an onset of clinical depression, which is not sadness. People keep telling me, ‘Don’t be sad.’ I’m not sad. I feel depressed. Is different. I can’t control it, ”he explained.
Cuomo has spoken on the air regularly about his battle with COVID-19, and has chatted with viewers on Twitter about his experience. Many of them say that their covid-19 symptoms also persist.
The inability to recover from exercise, or post-exertional discomfort, is often considered a hallmark symptom of ME / CFS, according to a 2015 report from the National Academy of Medicine. That report also estimated that between 836,000 and 2.5 million Americans have ME / CFS, although most are undiagnosed.
Currently, ME / CFS is estimated to have an impact of between $ 17 billion and $ 24 billion on the US economy, based on medical bills and lost income for patients, as many are unable to work, according to reports. CDC .
If you have chronic covid-19, it is important to rest
Living with ME / CFS, seeing Covid-19 spread in the city, and reading reports of patients not recovering has left Wilder nervous.
He has been using every connection in his career in Public Health to help raise alarm about the chronic symptoms that so-called “long-haul carriers” of COVID are likely to face for months or years.
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, quickly sold out with minimal publicity, showing her that there is probably a great need for the information she and the ME / CFS clinicians are providing.
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“The first thing that terrifies me is ‘Don’t exercise.’ You can get sicker, ”Wilder said. “This is something everyone with MS wishes someone had told them ahead of time. We don’t want people to go through the things we go through, “he explained.
Those with ME / CFS should prioritize managing activities or pacing, the CDC recommends. This means that they must understand their physical and cognitive limits, and not go beyond them, as this will result in a breakdown, delaying recovery. “Some patients and physicians refer to staying within these limits as staying within the ‘energy envelope,'” the agency said.
After being diagnosed with ME / CFS, activist Terri Wilder has tried to apply the lessons she learned from the HIV movement to fight for more research and better care for those with her disease.
Researchers are monitoring how patients’ symptoms progress
Several research and support groups are being established to help people struggling with COVID-19 symptoms in the long term and to explore how and why abnormalities of the immune system can lead to ME / CFS.
More than 14,000 people have joined an online covid-19 support group on the Body Politic website, which describes itself as a queer feminist health collective and media company. The community offers information for those who have tested positive, are experiencing symptoms, or are recovering from COVID-19. And it contains special sections for those whose coronavirus symptoms have lasted more than 30 or 90 days.
Members of Congress are also taking note.
Democratic Rep. Jamie Raskin of Maine is a co-sponsor of a bill, HR 7057 , called the “Understanding the Subset of Covid-19 and ME / CFS Act.” The proposed legislation calls for $ 60 million in federal funding, or $ 15 million annually through 2024, for projects that include data collection, collaborative research centers, and a medical research program to be run by the National Institutes of Health and the United States Department of Veterans Affairs
One of the groups that would likely compete for additional federal resources is the Open Medicine Foundation (OMF), a collaboration of scientists that focuses 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 the disease progresses and its possible side effects, especially chronic conditions that can occur after illness. The researchers will analyze the genomes of the patients, as well as the complete protein and metabolism profiles at regular intervals.
“Covid-19 provides us with an unprecedented opportunity to advance our understanding of post-viral diseases,” said Dr. Ami Mac, Director of Translational Medicine at the Stanford Center for Genome Technology, which is associated with OMF.
“This could result in a long-term public health disaster that will leave untold numbers of new sufferers of a condition that feels like a ‘living death’ to those of us who are affected,” said Mac, who has the syndrome.
In the coming weeks, he hopes to finish creating an app whereby researchers can follow Covid-19 patients and their symptoms, tracking how and when they develop symptoms consistent with ME / CFS.
“We plan to obtain blood samples for a few years longitudinally so that we can see what molecular changes occur that prevent resolution of symptoms,” he said.
Both Mac and Wilder plan to remain strong advocates for long-distance carriers of COVID-19 who need all the support, scientific and social, they can get.
One way Wilder did that was by asking Fauci about ME / CFS and Covid-19 at a July 9 press conference hosted by the International AIDS Society.
Fauci’s recognition of the link made international headlines, and then he compared the two conditions publicly on at least two other occasions last month.
“Because of my HIV experience and my knowledge of social activist groups like Act Up, I quickly realized that we have to work together and that I have to take every opportunity that comes my way,” Wilder said.