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‘Long haul:’ Coronavirus survivors battling unexpected symptoms for months

Studies estimate one in 10 COVID-19 survivors will become ‘long haulers’

ORLANDO, Fla. – Ocala neonatal intensive care unit nurse Sheryl Cyr has found it increasingly difficult to be there for her little patients, after contracting coronavirus earlier this year.

“The fatigue is incredible,” Cyr told News 6 investigator Merris Badcock. “My hands constantly shake now. We put IVs into 450-gram babies. You need to have steady hands.”

Cyr’s shaking symptoms and chronic fatigue she believes were brought on by coronavirus, and nearly three months later, she has yet to shake the symptoms off.

“My normal life was running around, seven days a week, doing what you need to do. Now it is very difficult,” said Cyr. “It is not just being tired. It is debilitating. I still do curbside pick-up because I am too fatigued to even walk the grocery store.”

Atlanta-based fitness professional Ryan Makely says he also suffering from coronavirus symptoms, almost four months after testing positive for the virus.

“I was shocked at how bad I got it, and honestly I am still shocked at how long it has taken me to recover,” said Makely, who noted he wore masks and took the virus “seriously” since the beginning.

Both Makely and Cyr join a lengthening list of “long-haulers”: people who tested positive for COVID-19, but weeks, even months later, they are still experiencing symptoms.

“If you talk to a significant number of people, they will tell you that, for anywhere from weeks to months and possibly longer, that they have symptoms that are characterized by fatigue and a thing that they refer to as brain fog, which really means the difficulty concentrating,” Dr. Anthony Fauci told 60 Minutes last month.

Chronic fatigue is just one of a growing number of symptoms long-haulers experience. Fauci’s observations are backed up by first-hand accounts posted on social media groups, which started springing up when doubt started to set in.

“I was very confused [at first],” said Makely. "That is when I started reaching out, and I found all these support groups on Facebook, and on Instagram. It has been kind of amazing, because you do not feel alone in this.

“You tend to think you are going crazy, and unfortunately with this whole pandemic, it is one of those things, there are a lot of people that do not believe in it. When I was able to talk to these random strangers online it really validated my symptoms. It really validated my experience.”

Long-haulers like Makely often find themselves standing side by side with another group experiencing their own kind of coronavirus fatigue. “[There are] non-believers everywhere,” said Cyr. “It is very disheartening to drive around town, and to see people with no masks.”

Both a group of British scientists (who use the term ‘long COVID’ to describe a long hauler) and an article from the Journal of the American Medical Association estimate about 1 in 10 of all coronavirus positive patients later reclassify as long haulers.

“I think it is very possible,” said Dr. Antonio Crespo, a medical director for infectious diseases at Orlando Health, in agreeance with the scientists' findings. But he added there is a major caveat to his observations. “As an infectious disease specialist, we see most of the patients in the acute phase. Once the patient leaves, they tend to be followed more by primary care providers.”

That can make it hard for medical professionals like Crespo to track his patient’s long hauler symptoms.

Meanwhile, Cyr and Makely hope this is not something they have to live with forever.

“That scares me,” said Cyr. “I cannot imagine that this is my new normal.”

“It is not a hoax. It is real,” said Makely. “I do not think this is going anywhere anytime soon. We are in it for the long haul.”

RESOURCES FOR LONG HAULERS:

*If you know of a legitimate resource to add to this list, please email mbadcock@wkmg.com.

COVID-19 Long Hauler Advocacy Project - https://www.facebook.com/groups/Covid19LonghaulerAdvocacyProject

Florida COVID Longhaulers - https://www.facebook.com/groups/808469586361857

Long COVID Support Group - https://www.facebook.com/groups/longcovid/

Survivor Corps - https://www.survivorcorps.com/

Crowd-sourced survey of Long Hauler Survivors, by Karyn Bishof, Founder of the Covid-19 Longhauler Advocacy Project - https://docs.google.com/document/d/1BrWY0OEZTSM03QJfgwkSMj2jH6mpcxThPKcd0wEbBJw/edit?fbclid=IwAR383WMCKcqos4zVN8fBTqftim8J33M39NrzMFXFYMPl4dVxQhOk8CHFesM


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