For Patients & Advocates

“We’re still in the background struggling to live, day to day, and we need more attention.”  

A common frustration among patients suffering with Long COVID is the lack of clarity around the official diagnosis and resulting difficulties to obtain the necessary referrals for the various symptoms they are experiencing. Many Long COVID patients are losing their jobs after years of dedicated service to their communities due to their inability to function at their pre-COVID capacities. The lack of patient support, particularly for those in low income communities with limited access to healthcare, can lead to debilitating and even fatal repercussions.  

“We get lost in the shuffle of society.”

Patients and their supporters can use the resources on this page to learn more about advocacy and support groups, healthcare equity, the latest in treatment recommendations and information on how to navigate the obstacles that Long COVID presents.

Resources for Patients & Advocates

Interview with Ryan Prior, Author of “The Long Haul”

By Tamsin Zandstra

Ryan Prior is an author and journalist currently working at The Century Foundation, a progressive Think Tank based in Washington, DC and is also a journalist who has served as a science and health features writer at CNN throughout the COVID-19 pandemic. His book, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How they are Changing Healthcare Forever, was published November 15, 2022. 

Medical Misogyny, Gender Bias, and Long COVID

By Tamsin Zandstra

Medical misogyny, gaslighting and discrimination have been increasingly discussed since the start of the COVID-19 pandemic and are heavily associated with Long COVID.

Interview with Elisa Perego, Ph.D., on Long COVID and Social Media

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.

Interview with Fiona Lowenstein, editor of “The Long COVID Survival Guide”

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.

Hair Loss and Long COVID

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. 

Long COVID and Brain Fog

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.

[UPDATED] The Impact of Long COVID on the Workforce

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.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID

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. 

Long COVID and Seniors

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.

LCI Interview: AbScent Founder Chrissi Kelly

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. 

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