Resources for Patients & Advocates
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.
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.
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.
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).
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.