By Colleen Campbell
While post-viral illnesses are not new, they have been considerably neglected by the public health, medical, and scientific communities. This invisibility has, in many ways, been constructed by institutional neglect and medical sexism.
The COVID-19 pandemic is now causing a reckoning with this institutional neglect. This is because COVID Long Haulers and patient advocates for the chronically ill are forcing an unprecedented recognition for these chronic complex diseases.
Long COVID is a disabling, complex “multi-organ disease with a broad spectrum of manifestations,” and it primarily affects women.
There is currently limited understanding of what causes some COVID-19 patients to suffer new or ongoing long-term symptoms, including chronic pain, extreme fatigue, post-exertional malaise (PEM), brain fog, respiratory, and gastrointestinal problems.
However, it is now suspected that reactivated Epstein Barr Virus (EBV), among other viruses, may play a role in the etiology of long COVID (also known as post-COVID conditions or Post-Acute Sequelae of COVID-19 [PASC]).
Importantly, Long COVID patients may present with symptoms of myalgic encephalomyelitis (ME) — formerly chronic fatigue syndrome (CFS) — or a sister illness (i.e.., fibromyalgia, or mast cell activation syndrome [MCAS]).
The medical and scientific communities have historically treated ME as psychosomatic. Consequently, patients are still routinely exposed to gendered medical gaslighting, their physiological symptoms dismissed by physicians and misdiagnosed as anxiety, another serious illness that has not been taken seriously by the medical profession. In fact, for years ME/CFS was referred to as “yuppie flu,” a term that served as a reminder to patients that their illness was imaginary and cemented the neglect of this patient population.
Further, flawed epidemiological studies generated the common belief that only privileged white women suffered from ME/CFS. This racialized construct of ME/CFS effectively erased Black women’s pain from public health discourses on chronic illness. For decades, Wilhelmina Jenkins, a Black woman and Georgia-based patient advocate living with ME, has challenged the lack of urgency around ME by the Centers for Disease Control and the erasure of Black women. By putting a Black woman’s face on disability, Jenkins epitomizes intersectional advocacy and debunks the dehumanizing and racist stereotypes that harm Black women who suffer from chronic illness: Black women not only contend with physician gender bias; they also face providers who fail to recognize chronic pain on Black faces.
ME patients are further alienated and disadvantaged by the lack of study into the condition. When considering “disease burden,” which captures number of years lost due to illness, the National Institutes of Health has consistently overfunded “diseases that affect primarily men, at the expense of those that affect primarily women.” This disparity extends to ME, whose patient population comprises of over 70 percent women. This policy invariably disincentivizes researchers from studying post-viral illnesses while also delegitimizing the claims of those who bring their symptoms to light. To date, there is still no FDA-approved treatment for ME/CFS.
The ME community has engaged in research and advocacy for years around this issue. For example, Rivka Solomon, a Massachusetts based writer and patient advocate with the Massachusetts ME/CFS & FM Association, has advocated for the recognition and support of ME patients for over 30 years. Solomon has drawn attention to the “hidden epidemic” of ME, hidden because the disabling illness is not apparent on the body and patients suffer away from the public gaze. She first became ill after developing mononucleosis, caused by the Epstein Barr Virus; like many ME patients, she is often homebound and bedridden, an isolating experience.
Long COVID patients inherited, and are now responding to, these challenges. The very recognition of post-acute COVID by the government as a public health crisis stems from the mobilization of LC patient advocates and those in the ME community.
The Long COVID Alliance, a coalition comprising of researchers, scientists, and disease experts across the spectrum of illnesses, successfully lobbied Congress to appropriate $1.15 billion in NIH funding for Long COVID. This is remarkable, considering that the NIH normally allocates $5-13 million for ME. Additionally, Solve ME, an ME advocacy organization, and the Long COVID Alliance are spearheading the Covid-19 Long Haulers Act. This bill promises to increase research funding, expand Medicaid coverage, and enhance education and awareness for Long COVID and post-viral illnesses.
Within a year, Long Haulers have created several organizations to mobilize and support the community. Body Politic, a queer feminist wellness collective, created a Long COVID support platform on the Slack App that currently serves over 10,000 members in 30 countries. Additionally, Black women patient advocates are inserting their voices into public health discourses on Long COVID.
This movement is making it impossible to ignore an often-neglected patient population. Indeed, the pandemic is forcing a reckoning with “medicine’s blind-spot.” Yet, these achievements cannot eclipse the invisible battles still being waged due to: skeptical providers who still construe these illnesses as psychogenic; insurance companies committed to denying disability benefits to the chronically ill; and, a Social Security disabilities benefits process that is difficult to navigate. As well, some patients are finding the grueling struggle of living daily in bodies that feel utterly broken unbearable.
As we eagerly return to our pre-pandemic lives, we cannot forget the many who will not return, who will be excluded because of chronic illness and disability, and whose battle for recognition, care, and compassion is for the long haul.
Colleen Campbell, JD, PhD is an Acting Assistant Professor of Lawyering at NYU School of Law.