Panelists:

• Ryan Prior, author of “The Long Haul," and journalist-in-residence at The Century Foundation
• Ziyad Al-Aly, M.D., chief of research and development, Veteran Affairs St. Louis Health Care system and Washington University in St. Louis
• Ibrahim Rashid, founder/COO, Strong Haulers
• Michelle Wilson, long COVID patient

By Janine L.  Weisman

When people think of long COVID, symptoms symptoms like brain fog and fatigue may come to mind. But some people experience long-term effects on the heart and kidneys, an increase in high cholesterol and the onset of diabetes, said Ziyad al-Aly, assistant professor of Washington University School of Medicine.

“The way we think about it is an umbrella term that encompasses all long-term effects,” al-Aly said.

Wrapping our heads around what causes long-haul COVID has been hindered by a lack of understanding about what causes it — there are so few randomized clinical trials — and how to help patients overcome debilitating symptoms that leave them unable to work and maintain social relationships.

Three panelists who were all COVID long haulers shared their struggles with what has been recognized as a post-viral syndrome. Panel moderator Ryan Prior, a former CNN health reporter who is now journalist-in-residence at the Century Foundation, wrote a book about Long COVID, “The Long Haul,” published in November 2022. Prior said he didn’t know when he signed his book deal if he would be well enough to get through the writing process.

“I was not just reporting on it, I was living it,” said Prior, who had already experienced chronic illness for 15 years as a myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patient.

Ibrahim Rashid was an active 23-year-old graduate student with no pre-existing health conditions when he was diagnosed with COVID in November 2020. By the following March, he had developed heart issues, body aches and difficulty breathing. For a good year and a half, he had to use a wheelchair or a cane to get around.

“I struggled to walk,” Rashid said. “There was so much pain in my legs that I couldn’t stand.”

For months, retired emergency room nurse Michelle Wilson couldn’t sleep for more than one to three hours at a time. She watched her world get smaller as her deteriorating health kept her from maintaining social connections. 

“Your friends and family start to fall away because after they asked you for the third or fourth time, ‘Are you better yet?’ and you’re not, they stop inviting you to things. I was down to my husband and my kids and my doctors.”

Rashid and two partners developed software for a wearable device that tracks symptoms for people with chronic conditions. Their application, called Strong Haulers, takes inspiration from the wearables athletes use to enhance their performance only it helps sick people manage their health and wellbeing. By making symptoms predictable, patients can identify what triggers them and pre-empt them from happening or at least getting worse. Rashid also wrote a book due out in May about navigating life in his early 20s and losing friends as a long COVID patient.

Wilson founded and leads a virtual support group after realizing she had hit a wall with the health care system.

The program opened with a pre-recorded virtual talk by Lisa McCorkell, a co-founder of the Patient-Led Research Collaborative (PLRC) who summarized the work of Long COVID patients who formed online communities to share their experiences and compare symptoms when the government refused to act and health care providers dismissed their symptoms. Now these patients are funding research, McCorkell said.

“Through it all, patients have really been at the forefront of the response to COVID,” McCorkell said. “It’s clear that patients can and do change the world.”

Janine L. Weisman is editor-in-chief of Rhode Island Current, an online news outlet covering public policy and state government and part of the national nonprofit States Newsroom network. She was a 2023 AHCJ-Rhode Island Fellow.