I worry. Though given current circumstances, that’s hardly news. Let me be more specific. My heart breaks for those who have lost their lives to COVID-19, and the families who bear such inconceivable loss. Yet, I also worry about those who have lived. I inhabit a life defined by chronic illness. A life lived on the sidelines, and I’m concerned that many more will soon be relegated to this shadow world. And I’m worried that our medical system, our very society, is structured in a way that will fail them before they’ve even been identified.
COVID Long Haulers
By now, we’ve likely heard mention of the COVID “long haulers,” as they call themselves in online forums, ad-hoc communities, and social networks. Doctors and other healthcare practitioners have pronounced them “recovered” from their confirmed or suspected COVID infections, but they are far from well. Despite their genuine efforts to return to pre-COVID activities, they report myriad debilitating symptoms, including exhaustion, headaches, weakness, brain fog, widespread pain, fevers, and many more.
To be clear, I’m excluding from this group those who suffer measurable organ damage from COVID (which is yet another area of urgent concern). For this article’s purposes, I’m referring to patients whose symptoms are still present after all measurable signs of disease have passed. By definition, there’s nothing there. At least, not according to current medical understanding and teachings.
There’s been an uptick in the discussion of myalgic encephalomyelitie/chronic fatigue syndrome (ME/CFS), especially as it relates to COVID patients. Dr. Fauci, one of the top infectious disease experts in the U.S., told Medscape on July 27, 2020:
“Even after you clear the virus, there are postviral symptoms. I know, because I follow on the phone a lot of people who call me up and talk about their course. And it’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.”
StatNews and the Washington Post both carried articles recently about the plight of post- COVID patients, who are walking the same path as ME/CFS sufferers.
We don’t know conclusively yet if COVID is a virus that causes the same ME/CFS profile, but personal accounts from patients strongly suggest it. It would join the ranks of Ebola, Epstein Barr, and Herpes viruses as capable of causing puzzling, ongoing symptoms after so-called recovery.
Unfortunately, there’s no place for the swelling ranks of those still ill with postviral illness. Most often than not, they report being dismissed by family members, friends, and their own doctors. They’re pushed toward mental health diagnoses, including depression and anxiety.
Overlap with ME/CFS
I was diagnosed with ME/CFS after a full decade of illness, and only after countless trips to specialists and diagnosticians.
The profile of ME/CFS patients is relatively heterogeneous: I’ve seen a list of more than thirty symptoms that some portion of people report. I say relatively because there are quite a few overarching commonalities, including long-term, severe fatigue, brain fog, and severe lack of stamina.
Symptoms tend to wax and wane over time, but rarely fully resolve. After more than twenty years of living with this kind of chronic illness, the best I can do is try to stay within my energy envelope. I think of the envelope as defined by the percent of “regular activities” I can participate in until I get sicker, landing myself in bed. I average about 50 out of 100, but that number fluctuates.
But even with that simple scale, the level of disability caused by ME/CFS is hard to articulate and even harder for others to understand. A pre-eminent ME/CFS researcher and clinician at the University of Miami, Dr. Nancy Klimas, explained in a 2006 Press Conference:
“They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…”
While there is very little understanding in the medical community of ME/CFS, the disease is not all that rare. The CDC estimated that one million people suffered from ME/CFS in the U.S. alone, before COVID-19. Organizations such as the NIH, Mayo Clinic, and WHO list the condition on their webpages, with accompanying short descriptions. However, most information is superficial — there’s no ability to dig deeper into large cohort studies or ongoing research, mainly because there aren’t any.
This is not to imply that ME/CFS does not have a biological basis; individual clinicians and researchers have documented abnormalities in mitochondria, cell energy production, and natural killer cell function, among others. These limited insights hint at dysfunction across multiple bodily systems, but are as yet unable to be widely tested and understood.
There’s no medical test for ME/CFS; it’s mainly a diagnosis of exclusion when all else has been ruled out.
Gaslighting and Self Doubt
When I became continuously ill after an acute viral infection, I visited doctors filled with good intentions. I believed, like many current post-COVID patients I’ve read about, that if I presented my symptoms clearly, rationally, and in good faith, that I would be treated in kind. That someone with more medical expertise would assess me, diagnose my symptoms, and send me on the road to recovery. Instead, I found doctors, both during primary care and ER visits, disbelieving and dismissive of my personal accounts, especially when basic blood tests came back normal. I relayed my experience of severe fatigue, disorienting dizziness, nausea, headache, constant sore throat, and occasional fever. I was generally told I was wrong, hysterical, or making it up.
One doctor claimed that I was pregnant without knowing it (I wasn’t, according to the only test he ordered). Another assumed I was having a panic attack (I wasn’t; tests years later would show postural orthostatic syndrome, where too little blood is pumped to the head upon standing). Yet another told me I had no discernable illness and left me alone in a hallway, vomiting into a bowl (I’d later learn nausea and vomiting were a hallmark of the chronic migraines, which had yet to be diagnosed).
After so many dismissals, I finally started bringing my lawyer husband to my appointments as a character witness. One doctor separated us and asked if my husband was abusing me. What else would explain both my symptoms and the reason he insisted on accompanying me (my non-abusive husband didn’t insist, he was there on my request)?
I worry that post-COVID patients will encounter many of the same responses, especially with restrictions in place that don’t allow them to bring a trusted friend or family member to medical appointments.
I was also steered to a diagnosis of depression, which I incidentally did have, but only after I lost almost everything in my life. I took my marching orders seriously, though, and pursued lots of therapy with occasional medication. That treatment did have an effect, but only on my ability to deal with all the loss, not with the physical symptoms or the cause of them in the first place.
Through my association with ME/CFS advocacy groups, I later learned that most medical schools do not address ME/CFS and postviral illness. Many medical schools have made strides to develop better patient care, but there remains a culture of labeling complex illnesses as ‘difficult’ patients.
The patient blaming is so severe that most of us with ME/CFS also grapple with constant self-doubt. In my early years and still now, on occasion, I feel the need to verify myself. Is it really that bad? Sometimes I veer too far in the other direction to not appear hysterical or participate in illness behavior, which doctors also accuse us of. I’ll sometimes ignore pain or new symptoms, chalking them up to this nebulous disease, only to discover that I have a kidney infection, a broken foot, or shingles.
Finally, after almost two decades, I’m relatively secure in knowing that I am not causing these maladies, even unintentionally. But it was a hard-won insight, and still not entirely bulletproof.
I hope for some with long haul COVID, their ability to point to a well-known, complex disease like COVID as a starting point for their symptoms will lend them some credibility with their doctors (and themselves) and give them a discrete starting point from which to investigate and devise treatment. The sheer volume of these patients may also prompt the medical community to look more closely and take further steps toward understanding post-viral illnesses.
To be clear, the impact of ME/CFS is twofold: it causes severe disability, including the inability to work, care for children, complete errands, and employ self-care, with no accompanying societal support. Our neighbors both have type 2 diabetes. They are more mobile than I am but have a permanent home health aide assigned to them, even throughout the current COVID crisis. That home health aide attends to them, and their needs from 8am to 8pm. I have no such option, either through my insurance company or from community services.
Our society is not set up to deal with people like us. There is very little outside help. Job-based disability benefits, if you’re fortunate to have them in the first place, run out. Some apply for Social Security benefits, but the process is long and often ends in a denial. Like almost all other organizations, Social Security guidelines don’t recognize ME/CFS.
The impact of this disease and lack of societal support means that a cohort of us has mostly receded from public life. We are often unable to participate in normal activities. We are partially or wholly homebound and frequently reliant on the care of family members or roommates, who participate with varying degrees of competence, belief, or disbelief. I, with my husband, am one of the fortunate ones.
As more post-COVID patients join us daily, the group of us living life on the sidelines only grows. In this respect, the mortality metric of COVID-19 is woefully inadequate in conveying the scale of loss, both individually and as a society.
I spend at least 100 hours a year on the phone to medical providers, billing departments, pharmacies, and insurance companies. My healthcare costs are generally about one-fifth of our income, even with my husband’s employer-sponsored insurance.
Treatment for ME/CFS is rare and expensive. Most areas of the U.S. have not even one physician who is familiar with the condition. The areas that have doctors tend to have year-long waitlists or prohibitive pricing. For example, one of the clinics I’ve had my eye on charges $400 for an initial visit and $250 for each follow up appointment and doesn’t accept insurance. Alternative medicine, such as acupuncture, can help a bit, but all of those charges are out of pocket. For most, that care is simply out of reach.
The monetary costs, not just personal but societal, is staggering. Before COVID, the CDC estimated that ME/CFS cost the U.S. economy $17 to $24 billion annually in medical bills and lost income. What happens when our ranks swell with those struggling to recover from COVID?
I wish I could offer a solution to this new group of postviral patients. I can’t. All I can do is offer tips to help around the margins.
Try to find a general practitioner who is competent, open-minded, and compassionate. Identify specialists who can address your specific conditions, even if it’s in isolation. I see a set of specialists who monitor and treat my measurable abnormalities: thyroid (endocrinologist), migraine (neurologist), arthralgia (rheumatologist), etc. A few know of my ME/CFS diagnosis. To tell a medical practitioner is to risk casting myself as unreliable, even suspicious, so I choose carefully.
Perhaps most importantly, pace yourself. Paradoxically, the harder you push your body to return to normal, the sicker you will become. Know and respect your physical limits. Trust your instincts to tell you when something is wrong. It usually is.
And at the risk contradicting the above paragraph, I implore you to also keep trying. Be persistent and creative in looking for solutions, well-intentioned care, and ways to improve your quality of life. Some of those things exist, even if a comprehensive solution does not — at least not yet.