top of page
Search

Sick & Tired – Long COVID: We Are Here!


Pandemic fatigue is all around us. This plague has left us depleted and gasping for normality.


At the start of COVID, we were vigilant and consumed with urgency as the virus spread throughout our community. We were obsessed – tuned-in to every detail, we came together, filled with compassion and concern for our neighbors and family. But, coping with the enduring stress and trauma of a pandemic for nearly two years has worn us out. Our resources are spent. And yet we must go on.


While we know the pandemic will eventually end, we also know that endings are messy. The finish will not materialize all at once. Only about half of the US population is currently vaccinated and mask wearing remains fractional. The virus continues to mutate, causing new flare-ups in susceptible regions. Ever-changing policies and ambiguous guidance have confused us with inconsistent demands: for instance, returning to the office only to conduct meetings on Zoom; or, wearing a mask on the public transportation but taking them off inside restaurants or bars.


The chronic uncertainty, dread and stress is exhausting. We are overwhelmed and threadbare… and, then there is so much grief to process...


It is with this keen awareness that I write this, and I am writing directly to each and every one of you, to ask you to reach into your used-up hearts and apprehend a simple truth: There are those amongst us who have been sick with COVID every day for two years. Try for a moment to imagine this. Close your eyes and be with us.



For the millions of people struggling with Long COVID, the ennui and longing that generally permeates our tired society is only a peripheral burden. We are struggling to survive. We can’t breathe. Our skin burns. Our vision is bleary. Our ears ring. We have rashes and tremors and bone-crushing malaise. We don’t sleep. We can’t work. Our thinking is impaired. In fact, there are more than 200 symptoms across ten organ systems that impact every second of our lives.


I know what I am asking; I know you are drained. But we are still here…and we are also tired. We are tired of being sick, of being dismissed, of being invisible and unable to find care. So, I am asking: Please, see us. Open your hearts to us. Learn about Long COVID. Stand with us in sounding the alarm.


Long COVID impacts every age and every nationality. One in every three people (1 in 3!) who are infected with COVID-19 will experience lingering symptoms. The symptoms are vast, particularly neurological, and, persistent.


I know you are just trying to get through the day; so, please allow me to make this easier, by providing you two very concrete ways that you can show your compassion and support:


1) Show up on October 21, 2021 (12 noon EST) for our virtual event - Long COVID: We Are Here! (see details below);


2) Submit a creative expression to show your support (e.g. an essay, artwork, song, poem, performance, article etc.) Link to submit now: https://longcovidwearehere.org/submissions/


Here are the Event details. Through the generosity of New York Fine Arts, Relational Space has been awarded as City Artist Corps grant to extend the scope and community reach of Long COVID: We Are Here!


Long COVID: We Are Here! is Virtual Reality exhibition co-curated by an international group of artists and scientists, many who also have Long COVID. Link to directly view the exhibition now: https://www.LongCOVIDWeAreHere.com

The installation is immersive, informative and engaging. And we are making it even easier to experience. On October 21, 2021 Relational Space is hosting an exhibition walk-through and panel discussion (12:00 Noon-1:30, EST). We invite each of you to attend and ask that you bring one other person with you.


Long COVID - We Are Here! seeks to raise awareness about the impact of this disabling post-viral epidemic; open doors for a research/medical community already strained by the COVID-19 pandemic to compel the establishment of an international, funded Long COVID research agenda; advocate for a global, open source repository of articles, resources, therapeutics and treatment strategies; and, urge widespread physician training related to Long COVID. Further, this Long COVID: We Are Here! exhibition unites in solidarity with other debilitating and frequently dismissed syndromes such as Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) for increased visibility and support.


In addition to the upcoming event, we have created a new website: https://www.LongCOVIDWeAreHere.org for the dissemination of resources and information about Long COVID and to act as a portal for community submission of art, essays, poems, songs, performances etc. from those who are sick with Long COVID as well as allies who support us. Creative expression is a powerful means of communication and advocacy. Further, creative expression is a dramatic act of self-care; so, provides a way to show support without further depleting our limited energies. In fact, research demonstrates that just coming to the Long COVID: We Are Here! exhibition and viewing the artwork will reduce your stress and improve your sense of well-being.


Finally, we have created a trailer for Long COVID: We Are Here!

Click here to view trailer: https://longcovidwearehere.org/wp-content/uploads/2021/10/LONG-COVID-WAH-PROMO-complete_1920-1080-resolution.mp4



On October 21st, Noon – 1:30 (EST) we will have a walk through of Long COVID: We Are Here! Here is a Zoom Link to get you to us at that time: https://us02web.zoom.us/j/89252103982?pwd=aERQeFJwYUllMzNMTVNOa3pQUkhnUT09 You will enjoy the walk-through with the twelve amazing participants who collaborated to co-curate the exhibit – as well as, four esteemed Long COVID Researchers and Clinicians (see participant list at the end of this post). The 90-minute Zoom format will make for easy viewing, informative insights and Q & A with the participants.


Pandemic fatigue is all around us. This plague has left us depleted and gaspin for normality.support your neighbors with Long COVID. When you join us and help raise our voices, I know help will finally come our way:

Long COVID: We Are Here!

Thursday, October 21, 2021 – Noon – 1:30 EST

Free on Zoom

Link to join: https://us02web.zoom.us/j/89252103982?pwd=aERQeFJwYUllMzNMTVNOa3pQUkhnUT09



Long COVID Researchers/Clinicians


David C. Lee, MDDr. David Lee is an emergency physician at the NYU School of Medicine and an NIH funded clinician-scientist who studies chronic disease with a focus on improving screening and diagnosis, especially to reduce health disparities. In his prior research, he has developed mathematical models of infectious disease transmission, studied healthcare utilization during disasters, and performed population health research to study the geographic distribution of chronic diseases like diabetes. Since early in 2020, Dr. Lee has been on the front lines of the COVID-19 pandemic, taking care of a range of patients from acute COVID-19 from patients with minimal symptoms to critically ill patients. He has been the primary lead researcher for all studies of emergency department utilization and outcomes among COVID-19 patients at NYU. He has led two clinical trials for acute hospitalized COVID-19 patients, including an ongoing multi-center randomized control trial. These studies have focused on interventions to improve oxygen delivery for severely hypoxic COVID-19 patients. In addition, he has been involved in basic science studies to understand the pathophysiology of acute COVID-19. He has led a study of anti-Annexin A2 antibodies, which antagonize a critical lung protective protein and might explain the hallmark clinical features of severe COVID-19. More recently, Dr. Lee has been studying Long COVID with a particular focus on identifying biomarkers that might explain the pathogenesis of the debilitating condition. He has enrolled a cohort of Long COVID patients with POTS and is assessing the possible role of antiphospholipid antibodies and autoantibodies to adrenergic and muscarinic receptors. Dr. Lee looks forward to the day when we will better understand how to treat both acute and Long COVID and also have a healthcare system better suited to addressing patients with undiagnosed, misdiagnosed, and poorly understood chronic diseases.


Susan Levine, MD – Dr. Susan Levine is an Infectious Disease expert, specializing in ME/CFS and Long COVID. She is also a New York based clinician providing ongoing treatment for ME/CFS and Long COVID. Dr. Levine is a ME/CFS and Long COVID Researcher with NYC Centers for Solutions for ME/CFS at Columbia Mailman School of Public Health as well as a clinician/researcher affiliated with the Center for Enervating Disorders at Cornell, where she is a visiting researcher. She served as former Chairperson of the Federal Advisory Committee on CFS (CFSAC). Dr. Levine's research and knowledge is extensive. She graduated from Albert Einstein School of Medicine and completed two fellowships in Infectious Diseases and Allergy and Immunology at Memorial Sloan Kettering Cancer Center and Mt. Sinai Hospital, respectively. During her second fellowship while working with Dr. Charlotte Cunningham-Rundles, one of the co-authors of the original case definition of CFS/ME, Dr. Levine became intrigued with seeing her first few CFS patients who sought a diagnosis. She examined natural killer cell function and abnormalities in catecholamine response in these patients. Over the last two decades, Dr. Levine has collaborated with other clinicians and researchers, co-authored a `Manual for Physicians’, a primer for internists about the care of CFS patients, and is currently serving on the Federal Advisory Committee for CFS.


Alice Perlowski, MD, MA, FACC – Dr. Perlowski is a board-certified Cardiologist and fellow of the American College of Cardiology. Her focus is in vascular medicine and preventative cardiology. She is Chief Medical Officer with Blooming Magnolia. She also holds a Master’s degree in Specialized journalism from the University of Southern California. Dr. Perlowski is a Long COVID survivor and advocate, and, founder of the Facebook support group, The “COVID Brain” Club.