“I almost raised my hand to take a taxi,” he said.
After about two years, Wilder was diagnosed with a disease called myalgic encephalomyelitis, also called chronic fatigue syndrome, a condition of neuroimmune with symptoms including brain fog, extreme fatigue, pain, immune aberrations and post-exertional malaise.
She has 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 was not a drug approved by the Food and Drug Administration, and that scientists studying the disease received only $ 5 million annually in research funding from the National Institutes of Health. Health.
At that point, he found himself in a completely new outbreak community, reminiscent of the stigmatized groups he fought at the height of the AIDS epidemic in the 1980s.
A chronic disease, ME / CFS can last for decades. It often takes adherence to some form of viral infection, for example Epstein-Barr virus or Ross River virus. The novel coronavirus is just one virus that can trigger the onset of this condition.
Wilder fears that hundreds of thousands of people with Covid-19 may have the same disease that has occurred to him. And leading medical experts have the same concern.
“It ‘s unusual how many people have a postviral syndrome that is very noticeable similar to myalgic encephalomyelitis / chronic fatigue syndrome.”
Many get sick and remain ill
More than six months into the global coronavirus crisis, many who contracted Covid-19 have not fully recovered.
As many as 35% of those diagnosed with Covid-19 do not return to their normal contraceptives two to three weeks after testing positive for coronavirus, according to a July 24 report by the US Centers for Disease Control and Prevention .
Of the 292 people surveyed by the CDC in post-Covid recovers, those recovering from Covid-19 reported a median of seven of the 17 CDC symptoms.
One still struggling with symptoms months later was CNN anchor Chris Cuomo, who first announced he had tested positive for coronavirus on March 31.
“I have a brain fog that won’t go away,” Cuomo said. “I have the onset of clinical depression, which is not sad. People keep telling me, ‘Don’t be sad.’ I’m not sad. I’m depressed. It’s different. I can’t control it. “
Cuomo regularly talks on the air about his fight with Covid-19, and he talks to viewers on Twitter about his trip, many of whom said their Covid-19 symptoms were -antay din.
“I can’t make up for the workouts like I did before,” he continues.
If you have chronic Covid-19, it is important to rest
Living with ME / CFS, seeing Covid-19 sticking to his city and reading reports of Covid-19 patients not recovering left Wilder.
He uses all of his connections from his public health career to help raise the alarm about chronic symptoms Covid calls “long-haulers” are likely to face in the months or years to come.
“The first thing that scared me was ‘Don’t exercise.’ You can make yourself sick, ”Wilder said. “It’s something everyone wants with ME who has told them in advance. We don’t want people to go through the things we did.”
Those with ME / CFS should prioritize activity management, or pacing, recommended by the CDC. This means you should understand your physical and cognitive limitations, and not push beyond them, as this will result in a crash, which will bring you back to your recovery. “Some patients and doctors refer to staying within these limits while staying within the ‘energy envelope,'” the agency said.
Researchers monitor how patients’ symptoms develop
A number of research and support groups have been set up to help people struggling with the long-term symptoms of Covid-19 and to explore how and why the immune system can lead to ME / CFS.
Members of Congress were also noticed.
The team launched a study of Covid-19 patients to monitor how their disease and the possible aftereffects, particularly chronic conditions that may occur after an illness, arise. Researchers will examine patients’ genomes, as well as complete protein profile and metabolism at regular intervals.
“Covid-19 gives us an unprecedented opportunity to advance our understanding of post-viral disease,” Drs. Ami Mac, director of translational medicine at the Stanford Genome Technology Center, associated with OMF.
“This could result in a prolonged public health disaster leaving countless newcomers suffering a condition that seems to be a ‘living death’ for those of us who suffer,” Mac said. with ME / CFS.
Over the next few weeks, he hopes to finish developing an app where researchers can follow Covid-19 patients and the symptoms, tracking how and when they develop ME / CFS-related symptoms.
“We plan to get blood samples for a few long years to allow us to see which molecular changes prevent symptoms from resolving,” he said.
Both Mac and Wilder plan to continue to designate themselves as strong advocates for Covid-19 long-hauls in need of all the support, scientific and social, they can get.
One way Wilder did this was by asking Fauci about ME / CFS and Covid-19 at a July 9 news conference organized by the International AIDS Society.
Fauci’s recognition of the link earned international heads, and he then went on to compare the two conditions to the public on at least two other occasions last month.
“Because of my HIV background and my knowledge of social activist groups like Act Up, I quickly realized that we need to work together and I need to take advantage of every opportunity available to me,” Wilder said.