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

[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. 

LCI Interview: Dr. Jennie Johnson on treating Long COVID

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. 

Health Equity + Long COVID: A Conversation with Dr. Brandon Marshall

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. 

Talking to your healthcare provider if you think you have Long COVID

If you are continuing to not feel well after having COVID, it may be time to contact your healthcare provider to determine whether or not you have “Long COVID.” Symptoms of Long COVID can include being excessively tired, headaches, persistent cough, abnormal taste and smell, brain fog, as well as other nonspecific symptoms.

Long COVID legislation update

As awareness about Long COVID increases, lawmakers are beginning to propose legislation to increase funding for research and resources for Long COVID. Here are a few examples of recent legislation that has been introduced.

This blog post has been updated to include two reports from August 2022.

Note on the recent NIH Long COVID study

On May 24th, Annals of Internal Medicine published a widely debated study on Post-Acute Sequelae of COVID-19 (PASC).  This study, sponsored by the RECOVER COVID Initiative, enrolled 189 people with lab-confirmed COVID and compared them with 120 controls, people never infected with COVID.  This study demonstrated that persistent symptoms after COVID were common, but that abnormal findings on physical examination or diagnostic testing were uncommon.  Another key finding of this study was that women and those with a history of anxiety were at increased risk for PASC. However, these headlines do not tell the whole story and, in fact, may serve to frustrate many Long COVID patients.

Clinical resources for Long COVID

We are often contacted by Long COVID patients seeking medical care or inquiring about clinical studies. While we are not a clinical research program, one of our aims is to connect those impacted by Long COVID with the most appropriate resources and support systems. There are a growing number of organizations and clinical studies being established to assist long haulers and those who support them. While this list is not exhaustive, we strive to continue to update the community on resources as they become available.

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