By Tamsin Zandstra

The Long COVID Initiative recently interviewed Elisa Perego, Ph.D., who was the first person to use “Long COVID” as a hashtag in May of 2020. The conversation touched on social media’s role in establishing both the patient-led term “Long COVID” and the community that has sprung up around it.

The Long COVID Initiative recently sat down with Fiona Lowenstein, a journalist with bylines in The New York Times, Vox, and The Guardian, and the founder of Body Politic, which began as a queer feminist wellness collective and is now a patient-led Long COVID advocacy organization with a popular patient support group. They are also the editor of “The Long COVID Survival Guide,” a peer-to-peer advice book on Long COVID that is now available.

By Tamsin Zandstra

There is no universally accepted list of Long COVID symptoms; however, according to the American Medical Association, there are more than 200 symptoms that have been associated with Long COVID, one of which is hair loss. 

By Tamsin Zandstra

A symptom of Long COVID which many people are experiencing is brain fog. Though not technically a medical term, it’s widely used to describe feelings of sluggishness, confusion, difficulty focusing, a “fuzzy brain,” trouble sleeping and headaches. Some clinicians and researchers refer to brain fog as cognitive dysfunction, a term preferred by some patients to fully convey how much symptoms impact them.

Recently we posted an article about how Long COVID affects employees and employers. As issues around Long COVID and the workforce continuously emerge, we plan to provide updates to keep the community in the know about the latest data and conversations on this topic. In this post we’ve provide a brief review of recent studies estimating the impact on the labor shortage.

By Tamsin Zandstra

#MEAction defines Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a chronic and complex disease that typically begins following an infection, most commonly with a virus. The disease-state is likely caused by the patient’s immune response, which is why a variety of physiological stressors appear to be able to “trigger” the disease. It is estimated that a total of 2.5 million Americans are suffering from ME/CFS, and ME/CFS has also been associated with Long COVID. 

By Tamsin Zandstra

As more research becomes available on COVID-19 and Long COVID it is evident that there is a gap in understanding on the implications for the older adult population, defined by Medicare as individuals over the age of 65.

By Tamsin Zandstra

Many Long COVID patients report ongoing loss of smell or Parosmia. On July 26th the Long COVID Initiative met with Chrissi Kelly, the founder of AbScent, a non-profit that works to help those with smell disorders through research, support groups and smell training. 

By Tamsin Zandstra & Bentley Holt

Dr. Jennie Johnson is an Infectious Disease Physician and Associate Medical Director at the Infectious Diseases and Immunology Center at The Miriam Hospital. She is also a Director at the Lifespan Lyme and Tick Borne Infections Center and an Assistant Professor of Medicine at Brown. 

Brandon Marshall, PhD, is a Professor of Epidemiology at the Brown University School of Public Health, and the Founding Director of the People, Place and Health Collective (PPHC) at Brown University.