SARS-CoV-2, the virus that causes COVID-19, has raised more questions than science can answer. But of the many puzzles that remain, some are more confusing – or urgent – than these: why do some people get sick and never get better?
This group of individuals, nicknamed the ‘long haulers’, are people of all ages, races and genders. Survivors of the virus who, months later, fight themselves against a constellation of harmful side effects that disrupt their ability to function. In a study published by Indiana University School of Medicine this August, in collaboration with COVID-19 nonprofit Survivor Corps, long haulers describe nearly 100 side effects, from fatigue and body aches to night sweats and neuropathy.
The study casts doubt on the idea that COVID-19 is a respiratory illness that lasts only a few weeks, and suggests instead that it may be a vascular disease affecting the eyes, skin, heart and brain can destroy, long after the sore throat goes away. While some hospitals, such as Mount Sinai in New York, have launched recovery centers for post-COVID care, the Centers for Disease Control and Prevention have not released much data on the long-term prognosis for those who survive.
In the meantime, it is the long-distance carriers themselves who are helping to demystify their foreign new world. Karyn Bishof, a Florida firefighter paramedic, is one of them. After suffering from sore throat, nausea and fatigue in late March, she tested positive for COVID-19 and was told her case was mild. But as the weeks went by, the symptoms did not go away. Over four months later, the fatigue remains constant and along with this, a host of other exhausting side effects.
“I’m dealing with drastic changes in heart rate… My oxygen levels drop in the low 90s, sometimes even the low eighties, I still have to deal with headaches, memory problems. I have a lot of trouble remembering things or sometimes finding my words, ”Bishof tells Yahoo Life. ‘I’m still dealing with a running and stuffy nose on and off. And then just a ton of other neurological problems, cardiac problems, chest pain, shortness of breath. I mean, the list goes on. ”
Jessica Hulett, a writer in New York, has been fighting over similar effects. “The fatigue has been really persistent … All I want to do is sleep from two o’clock every day, and some days I have to,” Hulett says. ‘I also started with a lot of similar cognitive problems. If I can not remember things, I can not focus on things.
Both Hulett and Bishof are struggling to find answers from doctors about what is happening. “I’ve talked a lot with my doctor for primary care … she’s allowed a little bit, she’s, ‘We do not know, as we do not know how long you will be sick,'” Hulett says. ‘We do not know what will make you better. We do not know why you are still sick. ”
Luis Santos, a native New Yorker who has experienced ‘crushing fatigue’, cognitive problems and an unexplained spike in his cholesterol since receiving COVID-19 in March, is also. ‘I have a team of about seven or eight doctors … and it’s a very scary thing that all these doctors say they do not know. They don’t know how to make me better, ”says Santos. “They hope they get better with time.”
Natalie Lambert, an associate research professor at IU School of Medicine and lead author of the long-haulers study, says this reaction is common. “I feel this is a huge health issue in the healthcare industry all over the world … We are just a society where you are healthy until you can prove you are sick,” Lambert tells Yahoo Life. “If you experience something outside the standard of medical care, it can be really difficult to get answers.”
Lambert, who started talking to patients early on after seeing a ‘wide range of COVID-19 symptoms’, says she does not blame doctors for the gap in knowledge. “They can only treat you with the appropriate and approved standard treatments,” says Lambert. ‘They can not experiment on humans – that’s understandable. But if there is no answer to your question, what can you do? “
Survivor Corps, a grassroots movement linking COVID-19 survivors, is trying to find just that – hosting webinars, sharing research and a Facebook group make nearly 100,000 people strong. It is from this group that Lambert drew information on side effects, with an open-ended survey allowing long haulers to add to their symptoms.
She says the importance of these individuals, and their stories, cannot be overestimated. “They are the experts of the world right now,” Lambert told Yahoo Life. “I mean, these patients know more about the disease than the medical community does.”
She hopes her research will serve as validation for long-distance carriers – and proof that they are not alone. “When you experience any of these symptoms, many people experience these symptoms,” says Lambert. “And if your doctor will not treat them, keep pleading for yourself to seek medical attention, as some of these can result in very serious health consequences.”
When it comes to the long haulers themselves, they urge others not to overlook the seriousness of this virus. “At the moment, the science for long haulers shows that [COVID-19] does not matter about your age. It does not matter about your fitness level, ”says Bishof. ‘It does not matter if you are a firefighter paramedic, or if you work from your computer at home … Do everything you can to protect yourself and others. This is not just a cold but a flu. ”
Video produced by Jenny Miller.
For the latest coronavirus news and updates, follow together to https://news.yahoo.com/coronavirus. According to experts, people over 60 and those who are immunocompromised remain the most at risk. If you have any questions, please refer to the GGD‘s and WHO’s resource guides.
Read more from Yahoo Life
Do you want to deliver daily lifestyle and wellness news to your inbox? Sign up here for the Yahoo Life newsletter
