Why are some COVID-19 patients suffering for months?

Medical researchers are hoping to shed light on what is causing ongoing coronavirus symptoms
Published: Sep. 18, 2020 at 1:06 PM EDT
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WASHINGTON (Gray DC) - Medical studies are showing some coronavirus patients are suffering full body effects months after getting sick.

The Center for Disease Control (CDC) released a study in July recognizing one third of people may not fully recover in two to three weeks. The CDC said that includes young adults with no underlying conditions. The patients are known as long-haulers.

Amy Watson tested positive for coronavirus in April and she is still suffering.

“Two steps forward, one step back over and over and over,” said Amy Watson.

Watson said she has had a fever for more than 180 days after contracting coronavirus.

“It’s hot, unpleasant for sure,” said Watson.

She believes she is dealing with the effects of the virus, and doesn’t know when they will end.

Watson said she is still experiencing symptoms like exhaustion, brain fog, heat intolerance, shortness of breath and joint pain. She calls herself a long-hauler, a term now used by doctors and patients worldwide. She felt alone in her fight, so she started a support group on Facebook called Long-Haul COVID Fighters. There are now thousands in the group just like Watson searching for answers.

“We need the help, the medical attention, the awareness,” said Gina Assaf, a long-hauler too.

Assaf, a technology researcher, is still feeling the effects of COVID-19. She says doctors were not able to help her heal fully from the virus.

So, she joined forces with other COVID-19 patients to create surveys to study the long-term impacts of the virus. The group uses social media and word of mouth to share the surveys.

“People were thrilled with the survey because they were like these are questions no one is asking us,” said Assaf.

The group sent out two surveys so far. The first survey focuses on the patients' testing dates, symptoms and the quality of medical care.

The group posted a second survey earlier this month. The survey is more in-depth and focuses on antibody testing and neurologic symptoms, like brain fog. If you think you are a long-hauler and would like to participate in the survey, click here.

Assaf’s is hoping these patient-led research surveys will get more medical researchers to devote time and money to study long-haulers. The surveys are already gaining traction from top medical experts. The National Institutes of Health Director Dr. Francis Collins featured Assaf and her team’s research in a September 3 blog post, calling them citizen scientists.

Medical researchers across the country are hoping to shed light on what is causing the ongoing symptoms. Dr. Avindra Nath, a clinical director at the NIH, has studied viruses like Zika and Ebola, and now he is launching a new study on COVID-19.

“I very well anticipated that people will have long-term affects,” said Dr. Nath.

“It affects all organs, so it may start as a respiratory illness but then it gets into the blood and then it get into a lot of different organ systems.”

Dr. Nath’s study will focus on persistent profound fatigue, pain and the neurologic complications.

He said he has lots of interest from people who are suffering to join this study.

“I’ve lost count as to how many, but it’s clearly in the hundreds,” he said.

Nath said he plans to start recruiting patients for his study this month.

If you are experiencing any medical concerns, consult your doctor.

Photojournalist/Editor Tyler Smith contributed to this report.

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