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

 

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.

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.

Rare manifestations of Long COVID

Common manifestations of Long COVID include headaches, fatigue, or cognitive dysfunction, otherwise known as “brain fog.” But many clinicians are unaware of some of the more rare signs and symptoms. This post focuses on three particularly challenging issues: parosmia (a distorted sense of smell that often causes food and drink to smell distorted), MISC-C (inflammation of various body parts in children) also known as PIMS-TS, and visual delirium (hallucinations). 

Long COVID + Children

Although children often have less severe COVID-19 infections and Long COVID appears to be less common in children, Long COVID can affect any person infected with COVID-19, regardless of age. Long COVID research studying the impact in children and adolescents is still limited. We previously posted an article summarizing research about Long COVID among children. This article provides an update of recent literature on the topic.

[UPDATED] Vaccination + Long COVID

New research out of the UK  suggests that “COVID-19 vaccination is associated with reduced risk of Long COVID.”

Is Long COVID disproportionately impacting women?

Months after the first onset of Lauren Nichols’ COVID-19 symptoms in March of 2020, she still had a laundry list of maladies that seemed to grow by the day: constant migraines, histamine rashes, reproductive issues, fevers, vertigo, and gastrointestinal problems so severe that some days she couldn’t even keep water down. Her neurological issues were so intense that one day, she says she was trapped inside of her shower because she couldn’t remember what the door handle was. Other days, she forgot what her hands were.

Patient advocacy groups + Long COVID

Advocacy and support groups are important resources for patients, particularly those navigating chronic or rare conditions. Patient support groups bring together people with similar experiences, such as a common medical condition, to bridge their medical and emotional needs through sharing personal experiences, coping strategies, information about the disease and treatment, and resources. Participation in online patient support groups has been shown to lead to patient empowerment, including being better informed through exchanging information and finding recognition. 

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