Updated: Apr 7
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, MD – Dr. 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.
Lawrence J. Purpura, MD – Dr. Lawrence Purpura is an infectious diseases specialist and Instructor of Medicine at Columbia University Medical Center. He is an alumnus of the Center for Disease Control’s Epidemic Intelligence Service, where he worked with Ebola survivor groups in Liberia and saw firsthand the unfortunate consequences that post-viral syndromes can have on patients and communities. Calling upon his prior work with post-Ebola syndrome, he implemented a longitudinal COVID-19 cohort study at the onset of the pandemic in New York City and has been studying the epidemiology and pathophysiology of Long COVID. He also provides care to Long-COVID patents in his infectious disease clinic.
Purpura LJ, Soka M, Baller A, et al. Implementation of a National Semen Testing and Counseling Program for Male Ebola Survivors - Liberia, 2015-2016. MMWR Morb Mortal Wkly Rep. 2016;65(36):963-966. Published 2016 Sep 16. doi:10.15585/mmwr.mm6536a5
Kyzar EJ, Purpura LJ, Shah J, Cantos A, Nordvig AS, Yin MT. Anxiety, depression, insomnia, and trauma-related symptoms following COVID-19 infection at long-term follow-up. Brain Behav Immun Health. 2021;16:100315. doi:10.1016/j.bbih.2021.100315
Long COVID: We Are Here! Exhibition Participants
Sam Baumel is a creative producer based in New York City with over a decade of experience. Sam consults with nonprofits, advertising agencies and businesses to help them tell stories with video and virtual reality. His success can be attributed to a passion for discovery – Sam loves learning about his clients’ industries and how to help them fulfill their missions. He collaborates with a diverse roster of talented creative technologists, independent filmmakers and companies carefully selected to best suit the scope of each project.
Helen Collen, originally from Brooklyn, NY, is an award-winning costume designer of 25 years. 18 of those years were served as the resident costume designer of the Billie Holiday Theatre in Brooklyn where she received a mayoral citation in 2014 for her services as an artist-in-residence. Helen is also a union affiliated wardrobe- supervisor/seamstress/costumer who has worked on Broadway, for major studio films and for television. Her costume designs and wardrobe work have appeared in hundreds of performances around the country that include the Kennedy Center in Washington, DC, CBS LateNight with David Letterman, Radio City Music Hall, ABC’s ‘Dancing With The Stars’, NYC’s classic American Place Theatre, HBO’s ‘The Wire’, Baltimore’s famed Centerstage theatre, to name a few. As a fine art photographer, she has successfully exhibited photos three times- twice in New York City and once in Los Angeles. Helen’s medium of choice to showcase her photos is Vibrachrome-a metallic option that allows the reduction of carbon footprints during reproduction. Not being limited to videography, painting, drawing, or avid reading also Helen’s crochet artistry-an eclectic mix of soulful hats, worn by performance artists including Macy Gray, Kelly Ripa and Common, can be found at www.helucination.com. Helen’s writing and editing credits are varied and include multiple press and/or media releases, copy for tv, poetry and short stories. As a songwriter (BMI reg.) She co-writes songs with her husband Phil Collen, lead guitarist of Def Leppard and singer god-mother Debbi Blackwell- Cook for the blues-rock-n-soul band DELTA DEEP featuring Phil on guitar and sharing lead vocals with Debbi. “Delving further into different creative mediums for a continued sense of exploration, expression and fulfillment is a continuous journey”, she states. “I am very grateful to be excepted into a community merging art and science for the sake of ignited resolution-a fiery exclamation of the need to find a permanent end to long haul COVID. And I do believe with all my heart there is an end.”.
Dominik Havsteen-Franklin is a Professor of Practice (Arts Therapies) at Brunel University, with a Ph.D. in Art Psychotherapy and Metaphor. He is also head of the International Centre for Arts Psychotherapies Training (ICAPT) for Central and North West London NHS Foundation Trust, Vice President for the European Federation of Art Therapy and a member of the Council for the British Association of Art Therapists. His research focuses on applying empirical methods to investigating and evaluating the use of arts to facilitate changes in health conditions. His recent research has centered on co-designing and investigating arts-based dynamic interpersonal therapy (ADIT) for depression, creative and resilience engagement (CaRE) for frontline healthcare workers, developing arts-based psychosocial practice in South Africa, and is a co-applicant for an NIHR funded large scale RCT (ERA) investigating the effectiveness of arts therapies for heterogeneous groups in mental health services. Dominik supervises PhD students from a range of arts disciplines. He also continues to work as a consultant, an art psychotherapist and a clinical supervisor for the National Health Service. Recent articles include:
Ali Pattillo is a journalist, audio, live event producer working as a reporter at Inverse magazine covering health, climate change and science. Previously, Ali covered health at CNN with Dr. Sanjay Gupta. She graduated from Columbia Journalism School in 2019 and Dartmouth College in 2017. She produced the Fourth International Vatican Conference: Unite To Cure in 2018. The interdisciplinary conference brought together scientific, political, business, and faith leaders to explore how science, technology, and 21st century medicine will impact culture and society. (See link: https://vaticanconference2018.com/)
She has written multiple articles about Long COVID, the most recent, 12/7/2020 Inside the Virtual World of Covid-19 Long-Haulers discusses the experience of long COVID including personal reports of symptoms, challenges and the need for research and treatments. https://www.inverse.com/mind-body/covid-19-long-haulers
The archive of Ali’s work at Inverse, can be accessed here: https://www.inverse.com/profile/ali-pattillo-19621088
Ali Pattillo website: https://alexandrapattillo.com/
Pato Hebert, MFA is an artist, educator and organizer. Hebert’s artwork explores the challenges and possibilities of interconnectedness. His projects have been presented at the Ballarat International Foto Biennale, the Songzhuang International Photo Biennale, the Centro de Arte Contemporáneo in Quito, Beton7 in Athens, PH21 Gallery in Budapest and IHLIA LGBT Heritage in Amsterdam. Hebert’s work has been supported by grants from the Rockefeller Foundation, the Creative Work Fund and the California Community Foundation. In 2008 he received the Excellence in Photographic Teaching Award from Center in Santa Fe. He serves as Chair of the Department of Art & Public Policy at Tisch School of the Arts, New York University, where his students have twice nominated him for the David Payne-Carter Excellence in Teaching Award.
Alexandra Juhasz, Ph.D. is Distinguished Professor of Film at Brooklyn College, CUNY. She is a core faculty member in the Interactive Technology and Pedagogy Certificate Program at the CUNY Graduate Center. Dr. Juhasz writes about and makes feminist, queer, fake, and AIDS documentary. She has a Ph.D. in Cinema Studies from NYU (1991) and attended the Whitney Independent Studio program as a video maker (1988). Author and/or editor since 1995 of scholarly books and writing on activist media in light of AIDS, black lesbian and queer representation, feminism, and digital culture, Dr. Juhasz is also maker of videotapes on feminist issues from AIDS to teen pregnancy as well as producing the feature fakes "The Watermelon Woman" (Cheryl Dunye, 1997) and "The Owls" (Dunye, 2010). Her current work is on and about feminist Internet culture (fakenews-poetry.org), with a most recent book, "Really Fake" with Nishant Shah forthcoming from U MN Press (2021), and two others on AIDS recently released or coming to press from Duke: "AIDS and the Distribution of Crises" (ed., with Nishant Shahani and Jih-Fei Cheng, 2020) and "We are Having This Conversation Now: The Times of AIDS Cultural Production," with Ted Kerr (forthcoming).
Kodandi Nithyananda is a multi-media artist whose work touches themes of the body as ephemera, the intersections of resilience, advocacy, illness, disability and pandemic, queering the sublime, and spaces of interiority. The artist’s work comes from a meditative space and is informed by life in an ashram and time spent as a monk. She has experience in web design, graphic design, arts, art education and fabrication. She is experiencing Long COVID at this time.
Shona Patterson, PhD (Brunel University, London) Shona Paterson, PhD (Brunel University London) has a transdisciplinary background in Natural Sciences (Marine Biology, Coastal Resource Management) and Social Science (Climate Adaptation, Social Justice, Governance). With a special interest in marginalized communities and social justice and equity, Shona’s recent research has focused on global flood risk and resilience, adaptation, and adaptive capacity in urbanizing coastal areas. Paramount to Shona’s work is the generation of defensible research informed by the needs of society and co-created with intended beneficiaries. Her work not only bridges science and policy but also focuses on effective and fit-for-audience communication of data and knowledge to ensure increased open and impactful discourse around risk.
Paterson, S. et al (2020). Examining the Potential of Art-Science Collaborations in the Anthropocene: A Case Study of Catching a Wave, Frontiers in Marine Science, 7, 340. doi.org/10.3389/fmars.2020.00340
Heather Raikes, Ph.D., is Founder and Director of Neopoetics, a creative research studio innovating at the intersection of future-focused art and design research and the developing immersive technology ecosystem (XR/VR/AR/MR). Drawing upon decades of creative inquiry in media art, human-computer interaction design, UX, 3D visualization, immersive storytelling, performance, video, animation, and embodiment, Neopoetics probes, discovers, and creates emergent sensory experience. Heather led production of groundbreaking early XR experiences and applications, including The Holographic Workstation financial data visualization that forged new models for 3D information design; SK-II’s holographic story experience for the Tokyo Olympic Pavilion; Capturing Everest VR, a 360 video documentary of an Everest summit that won a Digital Innovation Emmy Award. She has a Ph.D. in Digital Arts and Experimental Media. Her work has been exhibited throughout the world at venues such as ISEA International, Culturist, On the Boards, Henry Art Gallery, and The Kennedy Center, and granted fellowships with the Center for Advanced Inquiry in the Interactive Arts and Oculus Launch Pad. Heather is a former professional modern dancer with the Erick Hawkins Dance Company. Her creative work is uniquely rooted in the body, and in the design of embodied interfaces with emerging technological systems.
Jeffrey N. Siegelman, MD is an Associate Professor of Emergency Medicine and Associate Residency Director at Emory University School of Medicine. His academic interests include ophthalmologic emergencies, as well as using simulation for resident education and assessment. He is experiencing Long COVID and has been vocal about advocacy for research and treatment.
Siegleman, J. N. (2020). Reflections of a COVID-19 Long Hauler, JAMA, 324(20):2031-2032. https://jamanetwork.com/journals/jama/fullarticle/2773056
Bettina von Stamm, MBA, Ph.D. (Design Management, London Business School)
is the Founder and Director of the Innovation Leadership Forum. She works with leaders and leadership teams to give them confidence to innovate and collaborate in the 21st century. She delivers executive programs at prestigious universities and corporations around the world. She is a storyteller, inspirator and catalyst to enable different ways of thinking around, understanding, and enabling innovation. Bettina is a prolific writer in the fields of sustainability and innovation including written 5 books (The Innovation Wave, Managing Innovation Design & Creativity, The Future of Innovation, Innovation – The Path of Embracing Change to Create Value, Secrets Of Working Across Five Continents).
Karta Thomas is a ceramicist working on her degree at University of the Arts Central St. Martin’s, London. She is also an advocate for social change related to ME/CFS, recognizing the overlap of suffering and disease course between ME/CFS and Long COVID. When a virus she contracted in 2007 left her with profound protracted fatigue and multisystemic dysfunction, she experienced first-hand the invisibility, disbelief and underfunding that post-viral syndromes are met with. It took her 2 years to receive a diagnosis of ME/CFS and a further year to obtain medical tests and help. Her condition is largely self-managed through her own research on ME/CFS forums and associations. She is one of the moderators on an ME/CFS/Fibromyalgia online forum counting 4.1K members worldwide. She is a volunteer participant in the “Cure M.E.” Biobank study conducted by the London School of Hygiene & Tropical Medicine. https://cureme.lshtm.ac.uk/ She is part of the Bethlem Gallery artist led research group. https://bethlemgallery.com/ She is a qualified Hatha, Kundalini and Laughter Yoga teacher. She specialized in Yoga for ME/CFS and as such she is on the advisory panel of a yoga charity https://www.grdp.co.uk/.She worked 20 years in the pharmaceutical industry, in R&D Coordination and Regulatory Affairs, interfacing with The European Medicines Agency. On re-joining the workforce after 4 years of interruption due to ME/CFS, she became a Rehabilitation Worker for the Visually Impaired and later worked in the NHS as an ECLO at Moorfields Eye Hospital in London, where she helped patients navigate the practical and emotional impact sight loss had on their life.
Website (under construction): https://kartadharma.wixsite.com/karta
Facilitation by Leigh W. Jerome, Ph.D., Founder and Executive Director of a non-profit gallery and forum, Relational Space, Inc. She is a mixed media and installation artist and holds a Ph.D. in Clinical Psychology. She is currently experiencing Long COVID. With many thanks to Kirsten Richert, CEO Richert Innovation Consulting.
Relational Space is a 501c3 gallery and forum that facilitates collaborative sessions between artists, scientists, policy makers and activists – to blend silos of knowledge and co-curate immersive installations, with evidence-based narratives – to promote transformational, social change. https://www.Relational-Space.org