For Healthcare Providers

Clinicians around the world are struggling with the lack of an official Clinical Symptoms list and diagnosis for Long COVID. Healthcare providers are desperate for evidence-based information on Long COVID. They are seeking guidance on important questions such as which ICD-10-CM to bill and the appropriate diagnostic testing to order. Long COVID is affecting millions of people, and discussions on best practices and which multi-disciplinary approaches and subspecialists should be involved are urgently needed. 

This page consolidates and shares the most up-to-date guidelines, recommendations and data for clinicians, hospital leaders and researchers.

Resources for Healthcare Providers

 

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. 

Our Early Work on PASC Must Not Exacerbate Stigma

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.”

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.

Queer, trans and sick with Long COVID

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.

What is “medium COVID”?

A new term – medium COVID –  has emerged that may add further nuance to Long COVID diagnoses. As the pandemic has progressed, scientists have realized that Long COVID, which was developed in the early stages of the pandemic to broadly encompass the experience of lingering COVID symptoms past the point of what could be considered the acute infection, may be a more complicated diagnosis than originally expected.

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For inquiries related to the Long COVID Initiative, please contact long_covid_initiative@brown.edu