I’m USA TODAY Editor-in-Chief Nicole Carroll, and this is The Backstory, Insights into our biggest stories of the week. If you’d like The Backstory in your inbox every week, sign up here.
There are more than 200 symptoms of long-term COVID-19 including fatigue, brain fog, shortness of breath, headache, whole body pain, and gastrointestinal and heart problems.
Up to 12 million people have experienced “long-haul” symptoms, a group that is often overlooked when attention is paid to deaths (1 in 500 people in the US have died from COVID-19) and vaccination hesitation (only 63% of Americans ) concentrated 12 and older are fully vaccinated).
Most of those with long-term COVID-19 feel after approx three months. Even more recover about six months. But there are some people who have been suffering for a year or more.
“I feel alone every day and have the feeling that nobody cares,” said Ronald Rushing Sr., who has been dealing with COVID-19 since July 2020 USA TODAY health journalist Karen Weintraub.
Rushing had a sore throat, cough, and headache on July 27th. The grocery store manager from Southern Pines, North Carolina thought it was a cold. His boss sent him home to get better.
The father of six has not worked since then. He said the pain shoots through his head from the moment he opens his eyes in the morning until he closes them at night.
He told Weintraub he hoped telling his story will help others feel less isolated and restore their meaning. “It’s become the majority of my life because I’ve lost everything else.”
We want to help people understand long-haul vehicles too. Throughout the week USA TODAY shared stories of their courage, their despair, their hope for relief.
“People with long-term COVID want others to know that their problems are real, they are not making up and deserve help,” said Weintraub.
“The extent and duration of suffering have been extremely worrying. Also, the lack of information about a disease that affects so many people.”
Weintraub and Kristen Jordan Shamus of Detroit Free Press also told the stories of children and long COVID-19.
The 7 year old who has lost his memory and ability to walk and speak. The 14-year-old deals with anxiety and asthma. The 13-year-old who collapsed on the soccer field. He just couldn’t get enough air.
“Most children infected with the virus recover quickly and the disease is mild,” wrote Weintraub and Shamus. “But around 2% to 3% … struggle with a range of puzzling and sometimes debilitating symptoms that drag on for weeks or months with no explanation and no clear end date.”
Daniel Munblit, a pediatric immune system expert at Imperial College London who studies long-term COVID-19, helped lead a study in Russia that found a quarter of children hospitalized for COVID-19 were six to eight months old continued to have symptoms afterwards and was sent home. Most have recovered.
“We shouldn’t exaggerate the problem,” Munblit told our team, but “at the same time we shouldn’t downplay and say that nobody gets it.”
More research is needed, he said.
“We’re talking about possible consequences that could affect these children for decades. Even if it is a tiny proportion of children, it is very worthwhile to be examined. “
Journalists from 11 editorial offices of the USA TODAY Network contributed to this reporting. Most were surprised at how widespread COVID-19 appears to be and how many feel abandoned.
“For many people, even mild COVID infection could mean months or years of ensuing health challenges,” said Indianapolis Star health reporter Shari Rudavsky.
Health care providers try to help by creating multidisciplinary clinics that serve patients with a range of experts, Rudavsky and Health Journalist Stephanie Innes in the Republic of Arizona reported this week. “They are working together to come up with a plan that works without a playbook because treatment guidelines have yet to be written.”
In many clinics, demand already exceeds supply, says Dr. Peter Staats, who serves on the Survivor Corps Medical Advisory Board.
“This is a huge and enormous problem,” said Staats, a pain specialist and president of the Institute of World Pain. “This is going to be a wave of health problems that we have never seen before.”
So what would you like to know about long distance COVID drivers? They told our reporters that.
They worry about their future: “Literally every day I worked, I had this moment in my head … ‘Can I make it through the day or not?’ “Said long distance runner Adam Bodony, 36, a musician from Westfield, Indiana. “After the work day, I would basically have to lie still for hours.”
“I vacillate between ‘This will go away and I’ll have a normal life again’ and ‘Maybe I’ll have constant headaches or neck pain or burning pain for the rest of my life’ and I’ll just have to take care of it.” ”
You want a doctor who will listen: Andrew Stott, 31, a software development engineer and single father, tested positive for the coronavirus just before Thanksgiving and was sick for about 10 days. He was struggling to breathe, his heart was racing, and his limbs ached.
He spent three months on the waiting list for the University of Utah’s COVID-19 Long Hauler Clinic. As soon as he was seen, the providers gave him a treatment plan and followed up with a phone call.
“That was the biggest thing in the world. … To have a doctor who will certify me and actually follow up on me after an appointment – wow, ”he said.
Long COVID-19 destroys more than just health. The medical bills and lost paychecks are crushing people financially. David Robinson, who takes care of health care in New York for the USA TODAY networkHe spoke to Ronald Gaca, a 59-year-old New Yorker who contracted COVID-19 for the first time in March 2020. His chronic fatigue and breathing difficulties have largely tied him home; Hand tremors can last for hours.
His $ 800 a week unemployment benefit has just expired. “I’ve been building and concreting since I graduated from high school, and I haven’t had a clue about computers,” says Gaca, who lives in the town of Lancaster in the Rust Belt east of Buffalo.
“I don’t know if I can do anything else and it’s kind of scary.”
Long haul flyers are not dramatic. “I think a major long-term frustration for people with COVID-19 is that others understand that it exists,” said TC (Treasure Coast) Palm Health Reporter Lindsey Leake.
Middle school English teacher Chimére Smith, 39, from Baltimore sought help with shortness of breath, fever, and vision loss from her initial infection in March 2020. However, her symptoms were only dismissed as acid reflux and dry eye.
“It’s all in your head,” she was told. “It made me sicker. I was humiliated. I was ashamed.”
That summer, a doctor finally agreed that she was suspected of having COVID-19 – 15 months after her initial infection.
And that’s what long-distance drivers want above all, to be seen and heard, called USA TODAY Heath Editor Jennifer Portman.
“They do not pretend or are weak; this new disease has really lasting consequences. I hope this project has made them visible and given them a voice.”
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Nicole Carroll is the Editor-in-Chief of USA TODAY. Reach her at [email protected] or follow her on Twitter here. Thank you for supporting our journalism. You can subscribe here.