Health Authorities Call For More Research on Long COVID

Ashley McLaughlin has been homebound with lingering COVID-19 symptoms since contracting the virus in March 2020, while serving in the Peace Corps in Morocco.

At first, McLaughlin didn’t have severe COVID-19 symptoms—she lost her sense of smell and taste—but her side effects changed over the following months and never went away. Within a year, she went from working overseas to being completely debilitated. She now experiences multiple symptoms at varying intensities, including shortness of breath, chest tightness, high heart rate, and brain fog. Despite her conditions, McLaughlin says she isn’t taken seriously by her doctors.

“They've suggested everything from, ‘oh, you should try getting a boyfriend,’ ‘your priority should be to see a psychiatrist, this is in your head,’ to depression and anxiety,” McLaughlin tells Verywell. “It’s really hard to advocate for yourself when you're really sick, but the doctors don't believe you.”

Information on post-COVID syndrome, also known as “long COVID” is still a mystery to many experts. There is currently no clinical definition for the condition. Symptoms can range from fatigue and brain fog to menstrual cycle irregularities.

Sandra Adamson Fryhofer, MD, a board member at the American Medical Association (AMA) wrote in a press release that the United States “currently lacks the necessary resources to adequately support and provide expert care to patients with long-haul COVID.” 

“That’s why we must continue following the science and conducting research so we can better understand the short and long-term health impacts of this novel illness,” she wrote. 

On June 16, the AMA adopted a new policy to support research and education on long-haul COVID. This policy was announced shortly after the Centers for Disease Control and Prevention released its interim guidelines on how to treat patients with post-COVID conditions. 

“The AMA statements on long COVID are an important form of advocacy to support the clinical care and research necessary to help patients suffering from post-acute sequelae of COVID or long COVID,” Jason Maley, MD, program director of the Critical Illness and COVID-19 Survivorship Program at the Beth Israel Deaconess Medical Center, tells Verywell in an email. 

He adds that the American Academy of Physical Medicine and Rehabilitation is leading a collective of post-COVID clinics to develop more detailed guidance on assessing and treating long COVID. 

“Once completed, these will reflect a consensus of a large number of current experts across the country who are caring for patients with long COVID at many of the largest post-COVID clinics,” he says. 

Researching and recognizing long COVID has a more personal impact on people like McLaughlin, who feel neglected by their doctors.

To raise awareness for her condition and create a supportive community, McLaughlin started sharing photos and stories from other COVID-19 “long-haulers” on an Instagram account called Faces of Long COVID.

McLaughlin’s experience has connected her to other young people who struggle with post-COVID syndrome and inspired her to become an advocate for the chronic illness community. Her goal is to inform people that post-viral symptoms are real and that they can affect people regardless of age—even when the doctors don’t believe them. 

“It definitely opened my eyes to the chronic illness community as a whole and people who have been treated like this for decades and told that it's in their heads,” McLaughlin says. “It pushes people to the edge of society because the doctors don't help them so then they try to talk amongst each other; help each other.”

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.