Long Covid, ME/CFS, and the Need for Allyship

I worked full-time as an occupational therapist in the hospital setting for eight and a half years, including throughout the pandemic. I contracted Covid-19 at work in October of 2020, yet there is no way of proving it because my employer ended contact tracing per the CDC’s recommendation in May of 2020. I have never recovered.

It has taken me weeks to finish writing this. Before Covid, I could hike 15 miles at steep mountain elevation. I could kayak, jog, or do strenuous yard work after working a hospital shift where I performed hours of detailed electronic medical charting, engaged in constant multitasking. I was an independent being. I did not have to think about my body every second. I had no pre-existing conditions, and I was never hospitalized, though I probably should have been.

I went to the ER twice at the beginning of my illness, the second time with chest pain, shortness of breath, confirmed double pneumonia and a heart rate of 192. I was given a bag of IV saline and discharged. My nurse would not allow me to walk to the exit and insisted I use a wheelchair, yet I was discharged nonetheless with a heart rate of 150, one that I normally would not have reached even while running on a treadmill. In the weeks that followed I was offered only antidepressants as my health continued to spiral downward. It did not matter that I was an educated medical professional receiving care from the same hospital system in which I worked. The moment I became sick I was just a patient in a bed, no longer credible in the eyes of most physicians.

I had over 25 cycling symptoms spanning all the systems of my body. I relapsed from a trip to the grocery store, driving a car, a doctor’s appointment, and a 45-minute Zoom call. There were times I could not lift my head or arms, send a text message, or use a spoon. Chewing and digesting were physically draining; the room around me was a hazy blur. My skin felt like someone had lit it on fire. Receiving a hug was painful, as were sound and light. I spent weeks feeling like I had been poisoned. Insomnia raged. I would attempt to sleep when my spouse was awake in case I stopped breathing, but instead I repeatedly woke up choking and gasping. I lay on the floor of the bathroom for 30 minutes after vomiting, just to muster the energy for the 25-foot walk back to bed. An entirely foreign, utter exhaustion filtered through me, relentlessly buzzing and beating, and it did not leave.

Now, I spend my time alone in a dimly lit, quiet room listening to audiobooks. I dream of walking two blocks to the park, but I cannot. I have not been able to leave my house in seven months. I was a lover of life, a collector of experiences; I used every minute to do something productive or enjoyable. I grieve constantly for that person.

I cannot stand for more than ten minutes, or sit fully upright more than one hour. I miss watching TV, and reading books without having to stop after 15–20 pages. I miss being in the sunlight. In support groups people who have been sick as long as 16 months celebrate being able to take a shower or make a bowl of cereal. I let relationships fall away because I simply do not have the energy to sustain them. I strategically plan the number of times I navigate the stairs each day, and eat many meals from a mini fridge on the second floor so I can be nearest the only bathroom. I check the news for any sign of research breakthroughs, but so far the most relatable thing I have read is an account of a man who was lost at sea for months and the tiny routine he formed to keep himself alive. I cannot cook a meal or clean my house. I slog through well wishes from family and friends who expect me to fully recover, but in my body there is little indication of that. I am rotting.

I did not get a chance to say goodbye to my favorite places out there in the world; I went missing, overnight. There is very little joy, no spontaneity, and very little choice. I have lost my former personality, sexuality, hobbies, coping mechanisms and ability to socialize. I cannot talk too loud or too much; I cannot feel the deep anger at my situation without getting punished with an onslaught of physical symptoms. I am a pile of bones and skin, a fly in the amber. When I think of my future, it is blank.

When I initially became ill with Covid, I was given the federally sponsored two weeks off work to recover before having to apply for short-term disability. It is now recognized that a normal recovery time for non-hospitalized patients who do not necessarily go on to develop Long Covid is up to 12 weeks. Studies suggest that healthcare workers are seven times more likely to have severe Covid, but we were provided the same paltry surgical masks given to retail workers for patient encounters that were not confirmed Covid cases. Now, the CDC has finally admitted what it undoubtedly knew all along: Covid is airborne, and surgical masks alone are ineffective. In March of 2020, as the pandemic was just becoming well-known in the U.S., nurses at my job who expressed interest in wearing masks were forbidden, though it later became a system-wide policy. My heart breaks to think of how much suffering I might have been spared if I had been allowed to wear an N-95 mask continuously throughout my workday, or for all patient encounters. Even the N-95 masks we were given to use inside rooms of confirmed Covid-19 patients were reused/cleaned up to 20 times, 16 times more than the FDA’s eventual official recommendation of four. Outside visitors were at first restricted to protect workers, yet they would soon return for consumer satisfaction. The health screening process of employees entering work relied mainly on the honor system, and we were bombarded with almost political campaign-like reassurances that we were being protected. Many of us still got sick, though the total number was kept private.

I missed becoming eligible for a vaccine by only three months. I likely had three decades worth of work left in me. I have now, like many others, applied for SSDI (and already received my first rejection) as the economic impact of Long Covid looms and most long haulers have not returned to work. In the pandemic, “essential” worker seems to have meant expendable and replaceable. Healthcare is a factory and the product is people; I was merely part of the assembly line.

Like veterans who return from war and receive inadequate care, essential workers with Long Covid are discarded, forgotten, and unpaid. Many struggle to pay off their medical debt, or to even be believed. Some are ridiculed. This plight may sound familiar to the 250,000 veterans of the 1990–91 Gulf War who returned home with a multi-systemic, complex neuroimmune illness (Gulf War Illness, or GWI) and never recovered. Their symptoms are essentially identical to those of Long Covid, yet most people have never heard of this condition. Such is the story of Post-Treatment Lyme Disease, POTS (Postural Orthostatic Tachycardia Syndrome), EDS (Ehlers Danlos Syndrome), Fibromyalgia, and many other chronic illnesses. Such is the story of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

Imagine a chronic illness so horrific that a mild case might mean not being able to work ever again. A moderate case could mean rarely being able to leave your home for years at a time, and a very severe case could leave you with a feeding tube, unable to move, speak or tolerate human touch. ME/CFS already affected up to 2.5 million people in the U.S. prior to the pandemic (and up to 24 million people worldwide) but is funded at only 7% of its disease burden. (For comparison, as many people are affected by Multiple Sclerosis in the entire world as are affected by ME/CFS just in the U.S., yet MS receives significantly more funding and public awareness.) The cause of ME/CFS has not been confirmed. There is no approved treatment, and no cure. There are no 5K races or viral fundraising events, only silence, as both the general public and medical community are largely ignorant of its existence.

The history of psychosomatization and sheer neglect of ME/CFS reads like a conspiracy. ME/CFS and GWI specialist Nancy Klimas has said that patients “experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy,” but only a third of medical schools even include ME/CFS as part of their curricula. People with severe ME/CFS are still being forcibly institutionalized or sectioned due to medical ignorance. Stories circulate of patients being thrown into pools for “physical rehabilitation” to prove their symptoms are psychological and nearly drowning, clearly physically ill. Parents are accused of child abuse when there is no clear medical explanation for their children’s deteriorating health. Though rare, ME/CFS can directly cause death, as in the tragic cases of Sophia Mirza and Merryn Crofts, and for some families it is even a fight to get it listed on death certificates.

For a majority, a virus triggers ME/CFS. Would Long Covid even exist right now if medicine had paid attention? For many people, Long Covid will be or is ME/CFS.

With an eventual projected 15 million people with Long Covid in the U.S. alone, we are in a public health (and subsequent economic) crisis. Studies show that people with Long Covid experience a quality of life that is worse than Rheumatoid Arthritis, COPD (Chronic Obstructive Pulmonary Disease), and end stage lung cancer; they experience more difficulty with activities of daily living than cancer rehabilitation patients. 85.9% of long haulers have PEM (post-exertional malaise), the delayed and debilitating worsening of symptoms after even simple physical or mental exertion that is disproportionate to the activity itself. Imagine if typing one more word or folding one more towel was the difference between carrying on with your daily routine or spending the next several days to weeks in bed so ill you can barely move. This is a hallmark sign of ME/CFS.

While the media has been a helpful ally of long haulers overall, there remains consistent reporting that the vaccine is a cure, or that Long Covid clinics are helping people recover, when these anecdotes are not actually panning out for a majority. More data is needed. Until a pathophysiology is determined, Long Covid clinics have little to offer except reassurance and referrals to specialists, most who also do not have any answers. Some Long Covid clinics do not even understand the main symptoms they are attempting to treat, like PEM, and are providing advice that is causing patients to relapse. Some patients who at first improve with the vaccine also seem to relapse later, and some get immediately worse and remain that way. News articles state that people are ill for “weeks and months,” as if there is a determined endpoint, though many have been sick for over a year, with no end in sight. “New theories” such as viral reactivations that suggest that answers for Long Covid are being found are not new theories at all, but have already been described in detail as part of the 9,000 peer-reviewed journal articles in the ME/CFS literature that are being seemingly ignored by the greater medical community.

There is also frequent mention in the news about the $1.15 billion in funding for Long Covid from the NIH, but almost eight months after it was made official just two infrastructure awards have been publically announced and research has hardly begun. We are grateful, but we need swift action, clinical trials, and congressional oversight for accountability. Our sense of hopelessness is profound. We are drowning.

We are also perhaps a bit wary, considering the NIH’s track record of gender bias in regard to funding as well as the historically poor funding of ME/CFS, Lyme, and post-viral illness. The same leaders involved in Long Covid at the NIH, including the beloved Dr. Fauci, dismissed ME/CFS as being psychosomatic in the past, causing serious repercussions for research, though they now recognize it is physiological. It remains to be seen if researchers who are experts in post-viral illness will finally be given adequate funding, or if research subjects will be treated as valid teachers of their conditions. Some theories matching the patient experience, such as the notion that ME/CFS could have a mechanical basis, are being entirely ignored in research. The U.K. recently announced funding into Long Covid of which only a minority is slated for quality biomedical research. £1 million of this funding has been allotted for a weight loss program, an idea much equivalent to expecting a dose of Ibuprofen to heal a broken bone. This is a rare, global opportunity to learn more about neurological disease, autoimmunity, etc. with clear broader implications. It cannot be squandered.

As time crawls forward, long haulers are committing suicide to end the agony of getting no help with endless physical and mental symptoms. People with ME/CFS have a suicide rate of seven times the normal population, due to the constant suffering of not being able to live a meaningful life, even in the smallest capacities. Cindy Siegel Shepler, with the support of her spouse, went to Switzerland to die with dignity in 2019. In 2008, a loving mother in the U.K. assisted her daughter to die through morphine toxicity because she could no longer bear to see her in such pain. Whitney Dafoe, a person with very severe ME/CFS and son of geneticist and researcher Ron Davis, has suggested that the mere act of staying alive in the face of this brutal illness is a means of resistance and activism in itself. Yet 18% of long haulers in one poll reported contemplating suicide. Discovery of an efficacious therapeutic would surely decrease this immediately.

When people talk about Long Covid, some are reluctant to believe the level of debility it brings to the previously healthy, perhaps because it is so far from what they have felt in their own bodies. Many of us were fit and active, very focused on health; some of us were athletes, even Olympians. We did not become so deconditioned within days of illness onset that we could not brush our teeth. Instead we are teetering on the edge of a cliff, a tragedy of genetics and various other still unknown factors, repeatedly trying to heal without any real help and experiencing fresh devastation each time we are slammed back down again.

We must stop viewing chronic illness, whether intrinsically or subconsciously, as the fault of the patient. Chronic illness is not a lesson to be learned, or a punishment for bad choices. It is not due to lack of motivation. We seem to only be interested in stories of healing and happy endings. We are so distracted by new advancements in technology that we do not admit how little we actually know. We subscribe to the American ideal that if we work hard enough and put in enough time we can achieve anything — that we are in complete control of our lives, bodies and destinies. We are not.

Those with control have repeatedly failed us throughout the pandemic, from the Trump Administration’s outright denial of Covid to Joe Biden stating that the virus “no longer controls our lives” as it continues to rage. The CDC provided a confusing message directly in opposition of the WHO regarding mask wearing, then later changed its mind. There was never an initial mention of the potential for chronic illness after a case of Covid, though it has been well documented historically, with constant focus on deaths and hospitalizations only. Any drugs recommended to mitigate Covid in its early stages are still being given only to the elderly or those with pre-existing conditions who are considered high risk, ignoring previously healthy people who battle to breathe, eat and sleep in their homes and then remain disabled one year later. Breakthrough infections that result in Long Covid are not being counted. The ridiculous narrative that children do not get Long Covid is still rampant. The actual incidence of Long Covid beyond estimation has not even been established in the U.S. We are still knowingly killing and disabling people.

I was told frequently that I was “young and healthy” and I would get better. My lab results were normal, so I would get better. I am not better. Because of my profession, I understand how to physically rehabilitate myself. It is not that simple. We have tried every supplement, diet, alternative therapy, and experimental pharmaceutical. Many of us have made improvements, but we are far from recovered. And even for those that have managed to heal, for how long will it remain? If they were susceptible to Long Covid, we don’t know if they will experience relapse with exposure to the next virus, bacteria, trauma, or other harmful pathogen.

Post-infectious illness should be common knowledge, not shrouded in mystery. We must determine the pathophysiology. We must find a specific diagnostic biomarker and treatments by funding biomedical research and clinical trials. The time is now. We need to dig much deeper. And we need to bring everyone along. We need to bring along ME/CFS patients who have been waiting for decades for some semblance of freedom and quality of life, including the minority of patients who might not have had an obvious viral trigger but experience the same symptomatology as those that did.

Activism and hope are alive in the disability community, but we are in need of many more allies. We are in need of curious, open-minded doctors and researchers, and healthy members of the public who want to get involved and help. HIV/AIDS research and treatment was propelled forward almost single-handedly by the activism of the LGBTQ community and allies, however most individuals with Long Covid and ME/CFS do not have the energy to storm the NIH when we cannot even get out of bed. We need help. No one is going to save us. We have to demand change.

Thane Black, a person with very severe ME and MCAS (Mast Cell Activation Syndrome) stated the following via Twitter: “To the doctors, policy-makers, journalists and others who once treated #pwME [people with Myalgic Encephalomyelitis] with disdain but now see the light: I don’t need your apology, or to see you shamed or punished. Become an ally today. May the road back to righteousness be as wide and frictionless as possible for you.”

May we all see each other as allies in the fight of our lives: the fight for health justice, biomedical research, treatment, improved quality of life, and cure. We are here, and we aren’t going away.

How can you help?

If you shop on Amazon, begin each purchase from smile.amazon.com and a small donation will be made to the charity of your choice. I support Open Medicine Foundation.

Organizations in need of public awareness and financial support: Patient-Led Research Collaborative, Open Medicine Foundation, Long Covid Alliance, Institute for Neuro Immune Medicine, PolyBio, Dysautonomia International, ME Action, Solve ME, Body Politic

If you are a healthcare provider or caring for someone with Long Covid, check out these resources by Long Covid Physio.

To understand PEM, a symptom unique to ME/CFS and many with Long Covid, please watch this video.

Unrest (Jen Brea, 2017; available on Netflix) and Forgotten Plague (Ryan Prior, 2015; available on Amazon)

The Puzzle Solver (Tracie White, Ronald W. Davis, 2021)