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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. 

This is a Letter to the Editor that the Long COVID Initiative submitted to Annals of Internal Medicine on 13 July 2022 in response to “A Longitudinal Study of COVID-19 Sequelae and Immunity: Baseline Findings.”

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.

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.

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.

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.

LGBTQ+ long-haulers face medical bias, financial hardship, and a lack of resources

Guest post by Fiona Lowenstein

It’s not a great time to be an LGBTQ+ person seeking healthcare in the United States, given recent political efforts to criminalize some types of trans-affirming healthcare – but there are additional barriers for those with complex and often misunderstood chronic illnesses. LGBTQ+ COVID-19 “long-haulers” (a patient-coined term for people who developed long-term symptoms following a COVID-19 infection) sit at the intersection of these challenges.

Workers’ compensation provides medical and monetary benefits for a percentage of lost wages to employees who become sick or injured on the job. The details and regulations vary widely between states; however, workers must typically prove their injury or illness occurred during the course of their employment. For certain illnesses, including COVID-19, this can be particularly challenging.