The New Republic Alexander Zaitchik
<https://newrepublic.com/authors/alexander-zaitchik>/February 2, 2021
The Forever Disease: How Covid-19 Became a Chronic Condition
Thousands of people have been suffering a slew of crazy
post-infection syndromes for months—and there’s no end in sight.
Covid-19 is a trickster. Those who have lived with it the longest often
describe the disease as if it knows what mischief it’s making. Miel
Singletary Schultz, a 48-year-old “long hauler” and former sailing crew
worker in San Diego, thought she had experienced every possible symptom
when in October her skin began exuding tiny yellow crystals all over her
body; a fellow long hauler suggested it might be uremic frost, the
manifestation of a kidney disease. The skin discharge was not the most
debilitating of her dozen-plus symptoms, which included headaches, nerve
pain, cognitive dysfunction, hair loss, constipation, and extreme weight
loss, but this one seemed especially sinister. It suggested a future
defined by an endless parade of bizarre maladies, on top of the baseline
fatigue that has kept her out of work since summer.
“This unpredictable disease is so devastating, it’s had me on my knees
begging God to let me die,” said Schultz. “I feel like I’m being
tortured, or going through a long and terribly painful transition into
something else. I can hardly perform basic tasks, and can’t imagine
going back to work or stepping on a boat. I’m not sure what I’ll do
without insurance. The total failure of our institutions makes this
experience all-encompassing, almost as bad as the virus itself. Nobody
deserves this.”
Rather than depicting a simple fork, with one route leading to death and
the other to recovery, Covid-19’s prognostic map resembles a chaotic
intersection. While some roads do lead back to health, others feed into
post-viral roundabouts that, as in a bad dream, have no visible exits.
Every day, the number of Covid-19 survivors trapped on these roundabouts
grows; thousands have been on them since March of last year, and
thousands more will certainly join them as caseloads spike across the
country. Many of these long haulers had mild to moderate symptoms during
infection, were never hospitalized, and suffered no organ damage. As of
early January, they were still waiting for science to name their condition.
By now, most people are familiar with this condition’s troika of
persistent fatigue, short breath, and the vague cognitive issue known
as“brain fog.”
<https://www.thecut.com/article/what-we-know-covid-19-brain-fog.html>Like
the word “recovered,” this too-brief litany—until very recently echoed
by the Centers for Disease Control and Prevention—conceals much more
than it explains. The stories cataloged on the proliferating number of
online long hauler support groups don’t describe nagging tiredness or
grogginess of the sort to which we can all relate. They describe a
debilitating symptomatological clown car that is possibly unique in the
annals of human disease. “We used to say TB, sarcoid, and syphilis were
the three conditions that could give you just about anything,” Trisha
Greenhalgh, Oxford professor of primary care, told the/British Medical
Journal/podcast
<https://podcasts.apple.com/sa/podcast/what-do-we-know-about-long-covid/id283916558?i=1000488655746>in
August. “And I think Covid can[, too]. It can give you just about every
symptom in the book.”
In many cases, these severe fatigue and cognitive issues resemble
myalgic encephalomyelitis/chronic fatigue syndrome, orME/CFS
<https://www.medscape.com/viewarticle/936252>, a little-understood
multisymptom syndrome that can, in extreme cases, result in immobility
verging on full-body paralysis. Many long haulers also suffer symptoms
associated with a general malfunction of the nervous system, known
asdysautonomia
<https://my.clevelandclinic.org/health/diseases/6004-dysautonomia>, that
can find expression in every bodily system and organ. The systemwide
nature of Long Covid can make it difficult to isolate, or even keep
track of; manifestations include muscle, joint, back, and nerve pain,
racing pulse, fever, chest pain, chills, insomnia, fibrosis, headaches,
blurred vision, tremors, pounding and ringing in the ears, memory loss,
kidney problems, gastrointestinal pain and dysfunction, palpitations,
high glucose, low oxygen, cough, blood pressure swings, and traveling
blood clots. Some long haulers experience unstoppable nose runs of
bloody, yellow mucus; all manner of rashes, hives, and discolorations;
and olfactory disorders that make everything taste like “rotten meat and
metal,” in the words of one long hauler. (One rare exception appears to
be Dr Pepper, which has emerged as a Long Covid folk remedy.) Many
develop an inability to stand without dizziness, known as postural
orthostatic tachycardia syndrome. Heavyhair loss
<https://www.forbes.com/sites/saibala/2020/08/10/hair-loss-the-newest-potential-effect-of-coronavirus-that-people-are-reporting/?sh=40d9cce648ee>is
common, leading many long haulers to shave their heads.
Research on post-viral illnesses suggests that as many ashalf or more
<https://www.cidrap.umn.edu/news-perspective/2020/11/half-recovered-covid-19-patients-report-lingering-fatigue>of
those who survive the virus could suffer one or more symptoms for months
or years. Whatever the final number, the pandemic’s mortality rate will
continue to be dwarfed by the long hauler population. This raises issues
that so far have been pushed to the shadows of a pandemic whose symbols
are the mask and the ventilator. High among them is how to support and
care for a new cohort of chronically ill Americans, possibly numbering
in the millions. This effort will be complicated by the sheer range of
severe symptoms that do not show up onblood tests
<https://www.wsj.com/articles/suffering-from-covid-for-monthsand-battling-murky-test-results-too-11595865869>,
and may not have treatments.
“You’re going to have a massive swath of the workforce applying for
permanent disability.”
As we enter the second year of the pandemic, all eyes are turned toward
the distribution ofvaccines
<https://www.bloomberg.com/graphics/covid-vaccine-tracker-global-distribution/>that
began this winter. But if and when the pandemic is contained,
drastically reducing the risk of getting and dying from acute Covid, we
will still have to wrestle with a new chronic condition playing out on a
massive scale. This condition will challenge a health care system that
is ill-equipped to handle what it cannot diagnose, and test Joe Biden’s
administration’s commitment to addressing the full range of pain and
dislocation caused by the pandemic. If there is a bright side, it is the
potential for research into Long Covid to midwife breakthroughs in our
understanding of not only coronaviruses, but also the mystery of why
some people don’t recover their health following viral infections, even
when the tests all say they have.
------------------------------------------------------------------------
Last April, Amy Watson, a 47-year-old Portland schoolteacher who
contracted a Covid-19 infection the previous month, coined a term when
she founded the Facebook group “Long Haul Covid Fighters.” At the time,
her sequelae included a range of symptoms, such as a stubborn fever.
When I spoke to Watson in November, seven months later, the fever had
still not cleared. “I haven’t seen 98.6 since March, and suffer fatigue,
respiratory issues, and signs of post-viral dysautonomia, which affects
the whole nervous system,” she said. “The experience is full of doubts,
denial, and gaslighting.”
When long haulers talk of gaslighting, they could as easily be talking
about their doctor as about a virus that makes you feel insane. Watson
said her original inspiration to start an online community was her
frustration and anger with a medical establishment that often seemed to
dismiss her concerns about prolonged symptoms. From the beginning,
Watson noticed a gender dynamic that has been reported by many members
of the group. Whilemales
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7271824/>seem to be at
greater risk of acute and fatal Covid-19 infections, the long hauler
population appears to skew female, suggesting the condition is
related—as some early studies indicate—to autoimmune disorders that
affect women atfour times
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3328995/>the rate of men.
“A common middle-age to older woman thing, especially with older male
physicians, is that they doubt you,” said Watson. “People are waiting
two months for an appointment, only to be told it’s their fault, that
it’s psychosomatic anxiety. When people feel invalidated, it makes
dealing with this much worse. A lot of new members come to the group in
tears with the same stories.”
Amy Watson says she ran a fever for seven months straight.
COURTESY OF AMY WATSON
This is a familiar phenomenon among patient populations of other
“invisible” illnesses that disproportionately affect women, notably
ME/CFS. The medical community’s most urgent task is making Covid’s long
tail visible, which starts with giving it a name. “We need to know what
to call this thing,” said Watson. “We need a name and an accounting of
symptoms. Then, people who’ve been sick for months and feeling
invalidated can apply for disability or reduced workloads. We may not
recover for another six months. It could be two years. It could be
never. It’s all very scary.”
Those who live with ME/CFS know full well the consequences of living in
a medical no-man’s-land. Like Long Covid, ME/CFS usually has no clear
biological markers. There are no on-label treatments. Patients are often
undiagnosed, misdiagnosed, or altogether dismissed by doctors. What the
ME/CFS community realized early on, before the long hauler community had
achieved self-awareness, was the many similar challenges Long Covid
patients would face. “We knew you were coming: We’ve watched patients
develop our illness … after getting sick from a wide variety of viruses
and other pathogens,” declared an October/Washington Post/article
<https://www.washingtonpost.com/health/long-haul-covid-patients/2020/10/23/ab7c5324-0712-11eb-9be6-cf25fb429f1a_story.html>addressed
to long haulers, written by Jennifer Brea, Julie Rehmeyer, and Brian
Vastag. “We’ve been fighting for you since before any of us had ever
heard of Covid-19.”
ME/CFS advocates have waged this fight against shockingly strong
institutional headwinds. Though the disease has upended tens of millions
of lives worldwide, only a third of medical school curriculainclude
<https://www.ncbi.nlm.nih.gov/books/NBK284905/#>anything about the
condition. ME/CFS research funding, meanwhile, ranks close to the bottom
of diseases targeted by tens of billions of dollars in annual U.S.
government research grants. In anopen letter
<https://www.washingtonpost.com/news/to-your-health/wp/2015/07/20/dear-dr-collins-im-disabled-can-nih-spare-a-few-dimes/>to
National Institutes of Health director Francis Collins, Vastag, a
former/Washington Post/science writer with ME/CFS, described the anguish
of watching his government spend less on his condition—$5 million in
2014—than on hay fever.
Advocates often draw a connection between medicine’s lack of interest in
the disease and the hangover of its official categorization, until 1955,
as a form of “hysteria”—one of several psychosomatic conditions specific
to women. Into the 1990s, media reports sometimes called ME/CFS “the
yuppie flu,” based onfaulty CDC estimates
<https://www.researchgate.net/publication/237008650_How_Science_Can_Stigmatize_the_Case_of_CFS>that
only 20,000 or so cases existed nationwide, mostly affecting middle- to
upper-class white women. Neither was true. Using community-based
sampling, current estimates put the U.S. patient population at between
one million and two million, spanning all racial and income groups. The
gender difference, however, is stark in the developing literature:Women
<https://grantome.com/grant/NIH/R01-NS090200-02>are estimated to account
for between 60 and 80 percent of cases.
Their growing ranks may include Sharon Dow, who contracted Covid in July
and has been sick ever since. Unable to return to her job as a teacher’s
assistant at a school for autistic children in Walpole, Massachusetts,
she spends most of her time in bed managing chronic symptoms that
include a tightness in her chest and neck, pounding headaches, and
extreme fatigue. “My struggles to walk across a supermarket without
needing to sit down suggest ME,” she said. “The first time it happened,
a doctor said my chest was clear and shrugged, ‘We know very little
about this virus.’”
Sharon Dow says she has trouble walking across a supermarket without
having to sit down.
COURTESY OF SHARON DOW
Long haulers bring new advocacy muscle to ME/CFS, a disease whose
secrets may lie close to those of Long Covid. “Long Covid could be the
key to better understand ME and other complex illnesses that our system
hasn’t studied enough or dealt with very well,” said Leonard Jason, an
expert in the epidemiology of ME/CFS who directs the Center for
Community Research at DePaul University in Chicago. “Covid-19 is an
opportunity to track the factors that may lead to postinfectious
fatigue. Really going into the mysteries of unexplained illnesses has
the potential to transform medicine.”
Jason is concerned by early signs that the medical community is
repeating some familiar mistakes. “Our health care system has not done
well with invisible illnesses like ME, and my fear is that long haulers
are in for similar trouble,” he said. “General practitioners see a lot
of people with fatigue and pain. When the tests look good, they assume
it must be lifestyle-related, or psychiatric. They want to help, so they
often prescribe exercise or antidepressants, but these strategies are
not effective for those with ME.”
In September, after using her accrued vacation days and time off, Dow
applied for disability from her private insurer, and listed
“Covid-related illness” as the cause. She was approved for short-term
benefits in October, but didn’t receive the payment until December,
after three months of follow-up calls to the insurance company.
Many long haulers have similar stories. One member of Dow’s online group
hired a lawyer to investigate the delays at numerous insurers, and the
lawyer reported back that the industry has adopted a stalling strategy
on the expectation that people will either die or give up. The stress of
her worsening economic situation, said Dow, does not help her symptoms.
“People tell me to just buck up, go back to work, but the last time I
tried that, I collapsed with low oxygen and had to be hospitalized,” she
said. “I called the insurance company once a week, telling them, ‘I have
no income. I started a GoFundMe. My car was repo’d. My phone is going to
get shut off. Do you think I’m joking?’ People who think everybody who’s
not limping can go back to work don’t understand this illness and have
no idea what’s coming. You’re going to have a massive swath of the
workforce applying for permanent disability.” Ineligible for long-term
disability benefits herself, Dow has since filed for unemployment. She
has yet to see any payments.
Long haulers unable to return to work will face more obstacles than they
anticipated. Some may find temporary relief under theFamily and Medical
Leave Act <https://www.dol.gov/agencies/whd/fmla/pandemic>and
state-level benefit programs; most will likely turn to their earned
Social Security Disability Insurance benefits, which average $1,260.57
per month.
The eligibility determination for disability benefits is notoriously
stringent. The initial application typically takes three to five months.
Long haulers with proven anatomical damage will often have the objective
medical evidence helpful for speedier approval—but those with chronic
Covid symptoms that are more difficult to verify through diagnostic
tests can expect challenges similar to those of patients with other
poorly understood chronic illnesses, like ME/CFS. Though it’s estimated
that 75 percent of Americans with the condition areunable
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6357921/#B1>to work even
part-time, as of 2017, the U.S. Social Security Administration reported
that only about 13,000 individuals were receiving Social Security
disability for a diagnosis of ME/CFS.
“The more we talk to the long haulers, the more we see our experience
reflected in theirs, beginning with doctors who don’t understand or know
how to treat their debilitating symptoms,” said Therese Russo, a
33-year-old with ME/CFS and advocate with the group#MEAction
<https://www.meaction.net/>. “We are very sick, and yet most of us have
seen multiple doctors that say, ‘We can’t figure out what’s wrong with
you, and we don’t know how to help you.’ This is a major problem, given
how important a supportive, ME-knowledgeable physician can be to the
disability application process. Even with a good doctor, because there
is no standard diagnostic test that ‘proves’ you both have and are
debilitated by ME/CFS, getting approved for benefits can be really
challenging.”
Therese Russo, a 33-year-old with ME/CFS, has been rejected for
disability benefits twice.
COURTESY OF THERESE RUSSO
Russo knows this firsthand. Worsening symptoms forced her to step down
from her job with NYC Health + Hospitals in June 2018. Since then, she
says, despite having an official ME diagnosis and medical documentation
of her condition, her Social Security disability application has twice
been rejected. In January, she presented her case before an
administrative law judge, backed by legal representation and a medical
team that included specialists in ME/CFS and dysautonomia.
“It’s taken a physical, mental, and emotional toll on me, and I’m one of
the lucky ones,” said Russo. “Only about 10 percent of people with ME
even have a diagnosis. There are only about 15 ME specialists in the
entire country. Most people don’t have access to ME-knowledgeable
specialists or the medical tests that can improve your chances of
disability approval. My specialist has advised me to get a
two-daycardiopulmonary exercise test
<https://me-pedia.org/wiki/Two-day_cardiopulmonary_exercise_test>, which
objectively measures a symptom called post-exertional malaise in ME/CFS
and that has been key for other people in the community who have won
their cases. Only a few places in the whole country are familiar with
CPET testing in the context of ME/CFS. It costs $2,500 out of pocket.
How many people can clear this bar?”
Long haulers who are approved for disability benefits will automatically
qualify for Medicare, regardless of age, but both benefits come with a
hitch. The first SSDI check arrives five months after approval, followed
by a statutory two-year waiting period for Medicare enrollment. “The
mounting number of long haulers makes eliminating both waiting periods
even more important,” said Nancy Altman, president ofSocial Security
Works <https://socialsecurityworks.org/>, a D.C.-based advocacy group.
“In the meantime, some people found medically eligible may end up on SSI
[Supplemental Security Income] and Medicaid, but that requires having
virtually no income at all.”
Long haulers are already running out of savings, and in the coming
months will begin turning in greater numbers to disability benefits.
This will make the politics of expanding Social Security an early
challenge for Joe Biden’s administration.
------------------------------------------------------------------------
The first long hauler online communities were international affairs, a
refuge for Covid survivors from across the Anglosphere. It wasn’t long
before each nationality realized that they needed their own group. The
health care systems of Canada, the United States, and Britain were too
different to maintain a coherent conversation. Those early days provided
memorable educations in comparative health care systems. This was
especially true for Americans, who got their first glimpse of life in
countries with nationalized medicine.
“It was obvious at the beginning that the U.K. was worlds ahead of what
the U.S. government offers its people and what the medical community
understands,” said Dow, the long hauler in Massachusetts. “I’ve never
felt like America was so far behind.”
One of the advantages of a national health care system is the ability to
send information through the entire medical community quickly. By
summer, the U.K.’sNational Institute for Health Research
<https://www.ox.ac.uk/news/2020-07-07-national-study-investigates-long-term-health-impacts-covid-19>had
initiated an analysis of Long Covid and begun formulating an interagency
response. It has since produced a comprehensivereport
<https://evidence.nihr.ac.uk/themedreview/living-with-covid19/>summarizing
the state of knowledge and proposing frameworks for diagnoses and
treatments, and the NHS hasoutlined
<https://www.england.nhs.uk/coronavirus/publication/national-guidance-for-post-covid-syndrome-assessment-clinics/>a
new clinical care model that covers the medical, social, and
psychological dimensions of Long Covid.
Elaine Maxwell, who wrote the October NIHR report, describes Long Covid
as a systemwide illness requiring a systemwide state response, beginning
with frontline general practitioners who are fully informed about the
symptoms. “After we realized that Long Covid is real, followed by an
appreciation of its scope, there was a growing recognition that the
condition requires a new service model in primary care,” she said.
“Patients will also need caseworkers with a holistic view, who can look
at different systems and work through it.”
As early as May, a pilot project was set up at University College
Hospital in London. The National Health Service is now developingLong
Covid clinics
<https://www.reuters.com/article/us-health-coronavirus-britain-longcovid/english-health-service-to-offer-long-covid-clinics-idUSKBN26S2MD>around
the country, staffed by multidisciplinary teams including general
practitioners and specialists.
In the United States, the state response has not been so swift or
robust. There are a handful of Covid clinics around the country, notably
at Mount Sinai and University of California, San Francisco. But the
country’s famously segmented health system is largely at the starting
line in its response to Long Covid, with strained resources focused on
patients suffering from acute infections. Even when the pressure on
hospitals and ICUs lets up, it is unlikely that many American long
haulers will find doctors as informed as their NHS counterparts.
“Unfortunately, our system still adheres to a widget-based,
fee-for-service medical model unsuited to Long Covid,” said Rebekah Gee,
who served as Louisiana’s secretary of health between 2016 and 2020 and
drew national attention for her work on Medicaid expansion. “As a
wealthy country, the U.S. is uniquely challenged because we have not
invested in comprehensive social services like other countries.”
One of the U.S. system’s most glaring gaps and biggest potential stress
points, said Gee, is mental health. Studies ofpost-viral illness
<https://www.psychiatrictimes.com/view/fears-outbreaks-and-pandemics-lessons-learned>caused
by previous epidemics and pandemics, includingSARS
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC343855/>, show widespread
mental health repercussions. This is already a problem with Long Covid,
substantiated by surveys conducted on long-hauler forums, and by support
group members who have written about experiencing depression and
suicidal thoughts. Amy Watson, the long hauler in Portland, believes a
basic support network will be key for long haulers struggling with
stigma and isolation as well as symptoms. “In Portland, students doing
their clinicals at Oregon Health & Science University volunteered to
check in on us and help plug us into support systems. But it would be
better coming from the government,” she said.
In November, Britain’s NIHR announced a majorresearch initiative
<https://www.nihr.ac.uk/news/new-20m-call-for-research-into-physical-and-mental-effects-of-long-covid/26163>to
develop and build out mental health supports on the scale the government
believes will be needed. Gee said the United States will likewise have
to get serious about providing long haulers with mental health resources.
“There’s no way we’re going to be able to create enough mental health
professionals to deal with the challenge,” said Gee, who provided
counseling to victims and their families in the days following the 9/11
attacks in New York. “We need to start training a new generation of
primary care nurses, doctor’s assistants, and counselors to be part of
the mental care continuum. Community health workers can be an additional
arm of the system to wrap around those dealing with isolation,
loneliness, and illness. We’re already seeingincreased overdoses
<https://www.cdc.gov/media/releases/2020/p1218-overdose-deaths-covid-19.html>in
places hit hard by Covid. There’s a fraying of mental health happening
unlike anything we’ve witnessed in our lifetimes.”
------------------------------------------------------------------------
When Sonia Navas-Martin began researching coronaviruses at the
University of Pennsylvania School of Medicine in 1999, the field was a
virological backwater. The marquee viruses were HIV and avian
influenzas, one of which, H5N1, hadjumped
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2636215/>the species
barrier in Hong Kong in 1997. Only two coronaviruses, meanwhile, were
known to infect humans, and they caused the sniffles. The riposte to the
old saw, “We put a man on the moon, but can’t cure the common cold,” is
that nobody cared about curing the common cold. Funding and glory lay
elsewhere.
“There’s a fraying of mental health happening unlike anything we’ve
witnessed in our lifetimes.”
Coronaviruses were so far off the radar that they didn’t even make the
suspect list when reports broke, in early 2003, of an“atypical
pneumonia”
<https://science.sciencemag.org/content/300/5624/1394.long>causing
deaths in southern China. Chinese experts initially suggested it was
airborne chlamydia; other researchers were confident another bird flu
had crossed over. It wasn’t until April of that year, a month after the
mystery disease was named severe acute respiratory syndrome, that the
Sri Lankan virologist Malik Peiris and his research team in Hong
Kongidentified
<https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(03)13077-2/fulltext>the
culprit as a relative of the common cold, just as contagious but with a
mortality rate as a percentage of afflicted populations in the teens.
Navas-Martin, who had been doing research on mouse coronavirus, was
well-positioned to investigate SARS, and began to advocate for federal
funding to support an influx of young coronavirus researchers into the
field.
That influx stopped when quarantines in Hong Kong, Singapore, and
Toronto suppressed the spread and averted a pandemic. Scientific
interest and funding streams soon dried up. A similar script played out
in 2012, whenMERS <https://www.cdc.gov/coronavirus/mers/faq.html>, a
coronavirus first reported in Saudi Arabia with a higher case fatality
rate than SARS, seemingly made the jump from camels to humans. When the
MERS threat passed, so did the corresponding spike of interest in
coronaviruses. “Too many people saw SARS and MERS as ‘exotic’ events,
rather than the clear warnings they were,” said Navas-Martin.
“Abandoning coronavirus vaccine research was a big mistake. As a result,
we’re still at the beginning of our poor understanding of the molecular
mechanisms of SARS-CoV-2 and its sequelae.”
What research exists on SARS and MERS aligns with our developing
understanding of SARS-CoV-2, the virus that causes Covid-19. Three years
ago, a team at the Beijing Institute of Biotechnology identified an N
protein in the sequences of SARS and MERS that deploys an “unknown
mechanism” to monkey wrench the body’s production oftype-I interferons
<https://pubmed.ncbi.nlm.nih.gov/28148787/>. These are the cellular
emergency workers the body generates to stimulate the creation of
proteins that block viral replication and defend healthy cells. Research
suggests the virus’s impact on the interferon system, and the immune
system more broadly, is the cause of the “long SARS” symptoms found in
so many survivors of the 2003 outbreaks in Hong Kong and Canada. A
review of the SARS recovery literature in/Canadian Psychology/
<https://psycnet.apa.org/fulltext/2014-43048-001.html>found that as many
as half of survivors reported long-term bodily pain and a general
deterioration in overall physical and mental health.
In September, a team of scientists at Rockefeller University led by
Jean-Laurent Casanova located evidence of interferon dysfunction in
patients suffering severe Covid-19. Intwo
<https://science.sciencemag.org/content/370/6515/eabd4570>papers
<https://science.sciencemag.org/content/370/6515/eabd4585>published
in/Science/, the team identified two variants of faulty interferon
production. In one, rare genetic mutations impaired the body’s
production of interferon; in the second, the immune response resulted in
something potentially far worse: autoimmune antibodies that attack
interferons and other cells. How, exactly, these interact to result in
Long Covid, nobody can say. But by studying the general immune system
inflammation associated with other viral infections, researchers may be
starting to unravel how and why SARS-CoV-2 infection can leave an
enduring impact on cells, the central nervous system, and every bodily
organ long after the virus and its subsequent antibodies clear without a
trace.
“It is still too early to understand what is going on with the long
haulers,” said Qian Zhang, a research associate in Casanova’s lab.
“However, I will not be surprised if some of them have dysregulated
interferon responses, which might lead to syndromes that are associated
with uncontrolled inflammation. Long-lasting type-I interferon response
is very harmful to the body.”
Since not everyone infected with SARS-CoV-2 develops Covid-19 symptoms,
acute or chronic, many researchers suspect the answers will be found in
genetics research.
“Why does the virus refract the way it does through a genetically
variant population?” asked Navas-Martin. “Something is going on in human
genetics that affects the disease. So far, the best answers are faulty
interferon creation and a process called molecular mimicry, where the
host’s immune response recognizes some of its own proteins as a foreign
one after the virus has left. Understanding why this happens in some
people requires a sophisticated approach to the genetic interplay
driving the disease. Research is underway into the many unknowns. We’ll
have a lot more data in the spring.”
Chronic fatigue is Long Covid’s unifying symptom. Whatever other
ailments they have, long haulers almost always begin the litany here:
with the struggle to summon the energy or maintain the stamina needed
for the most basic tasks.
This is consistent with the post-viral literature. High rates of
persistent and often debilitating fatigue are well documented among
survivors ofSARS
<https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415378>,Ebola
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6046154/>,Epstein-Barr
<https://pubmed.ncbi.nlm.nih.gov/11063953/>(the “mono” virus),
numerousinfluenzas
<https://www.sciencedirect.com/science/article/pii/S0264410X15014334>,
and multiplemosquito
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4150370/>- andtick
<https://www.cdc.gov/lyme/postlds/index.html>-borne viruses. It is
estimated that one-fifth of survivors from the 1918 Spanish flu pandemic
never fully recovered, but suffered reduced health with a baseline of
chronic fatigue.
Patients experience post-viral fatigue on a spectrum. Some cases are
considered “manageable,” while others leave people completely bedridden
and in frequent pain. This deeper end of the chronic fatigue pool is
often home to ME/CFS. The hallmark symptom of ME/CFS is post-exertional
malaise (PEM), which is a flare of symptoms that can be triggered after
the most minor activities. In addition to severe fatigue and PEM, core
symptoms of ME/CFS include sleep dysfunction, pain, problems with
thinking and memory, and difficulty maintaining blood pressure and other
systems while standing, a condition known as orthostatic intolerance.
Studies show that, on average, MElowers
<https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-11-402/tables/4>quality
of life more than heart disease, lung disease, diabetes, some types of
cancer, and rheumatoid arthritis. After many years spent lying in bed,
patients may suffer fatal organ failure. Some choose not to wait that
process out. According to some studies,suicide
<https://pubmed.ncbi.nlm.nih.gov/16844674/>is one of the leading causes
of death among ME/CFS patients.
It’s unclear how many Covid survivors have already developed, or will go
on to develop, ME/CFS. The data from other epidemics, however, offers
clues. In one study of233 SARS survivors
<https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415378>in
Hong Kong, more than a quarter met the criteria for an ME/CFS diagnosis
after two to four years. Among those who contracted West Nile virus,
studies show20 percent
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4150370/>developed the
range of symptoms consistent with ME/CFS. As many as nine out of 10
people who“recovered”
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6046154/>from Ebola virus
outbreaks remain waylaid by symptoms overlapping with ME/CFS. Based on
similar literature, Anthony Komaroff, a professor of medicine at Harvard
Medical School, haswarned
<https://www.health.harvard.edu/blog/the-tragedy-of-the-post-covid-long-haulers-2020101521173>that
Long Covid could double the number of Americans with ME/CFS in the next
two years. Of these, some will recover over the course of years; many
will remain ill until treatments are discovered.
------------------------------------------------------------------------
Solving the mysteries of Long Covid involves stakes bigger than the
current pandemic. Biomedical research is a honeycomb of highly
specialized fields and subfields, most within a few degrees of
separation. A breakthrough in one area will often spill over into
others, causing a cascade of scientific progress. During the global
response to the HIV pandemic, the research efforts that produced the
first effectiveantiretroviral therapies
<https://pubmed.ncbi.nlm.nih.gov/20018391/>also advanced the state of
knowledge around everything from the common flu to hepatitis C, which is
now curable. It makes sense to expect similar spillover to result from
any sustained investigation into Long Covid triggers, symptoms, and
treatments.
“It’s possible that any new molecular mechanisms we find in Covid-19
will underlie other viral infections,” said Zhang, the Rockefeller
University scientist. “We already know that inborn errors in type-I
interferon pathways underlies not just Covid-19, but life-threatening
influenza and herpes simplex encephalitis.”
That’s why sufferers and researchers alike advocate for greatly
expanding research into ME/CFS. Breakthroughs in understanding Long
Covid could help treat ME/CFS, as well as address a broader national
crisis in fatigue. At any given time, a quarter of the U.S.
populationstruggles
<https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4817848/>with serious
fatigue; 4 percent report chronic fatigue lasting six months or longer.
Leonard Jason, the ME/CFS researcher at DePaul University, said
unlocking the dynamics of Long Covid may hold the key to explaining the
fatigue spectrum as well as other mystery illnesses—including
dysautonomia—where the state of knowledge remains primitive.
“Our approach to these illnesses is almost comparable to phrenologists
who were measuring skulls in 1850,” he said. “Understanding the
neuroimmunological underpinnings of these illnesses will cause a
dramatic change, as occurred with the discovery of neurons. In 100
years, doctors will be diagnosing them using an enormous amount of
patient data involving the billions of connections in the brain. They’ll
look back and wonder how we used such crude instruments to diagnose
people with these puzzling unexplained illnesses during 10-minute doctor
visits.”
It’s also possible these breakthroughs won’t lead to futuristic
diagnostics like full-brain mapping, but reveal how to read old tests in
new ways. Sonia Navas-Martin, the coronavirus researcher working on
Covid-19 antivirals, said immunogenetic research could result in “basic”
but effective tests to locate, prevent, and treat currently
unexplainable illnesses. “There are a lot of answers in our blood,” she
said. “When we have a better sense of what is happening with these
conditions, a blood sample could identify potential markers circulating
at the cellular level. We’re not there yet, but it’s doable. Unlike
SARS, the Covid-19 population is large enough to start studying it with
controls. It should be done.”
Getting it done will require resources and political will. Support at
the highest levels of the NIH—which in early December organized a
two-day workshop focused on Long Covid, its first such event—will be
central to this project. But history suggests it won’t be enough. The
lesson of SARS and MERS is that bullets dodged—or in the case of
post-pandemic SARS-CoV-2, bullets removed—are bullets quickly forgotten.
Developing treatments and cures for Long Covid and other neglected
mystery conditions is predicated upon breaking the tradition of
replacing terror with amnesia.
When asked if she thought history would repeat itself yet again,
Navas-Martin sighed and paused before expressing a case for cautious
optimism.
“Given the scope of this pandemic, I think the lesson has been learned,”
she said. “Not just by governments, but by scientists. We have to be
more involved in explaining why research into the long-term impacts of
Covid-19 and other viruses is critical, and justifies investments that
continue after the development of vaccines.”
This research can provide hope and, perhaps, new health to long haulers
for whom vaccines will arrive too late, as well as to members of the
neighboring ME/CFS community. Pouring research into how these viruses
ravage the body, and how to stop or undo that damage, is more than just
humane and medically important. In the last two decades,three
coronaviruses
<https://academic.oup.com/ajcp/article/153/4/420/5735509>with pandemic
potential have jumped the species barrier. It seems prudent and wise to
continue researching them inside and out, and to put that research on a
permanent war footing, with a fourth novel coronavirus in mind. For all
we know, it’s already here.
Opening Images, clockwise from bottom center: Courtesy of David S.
Younger, M.D., DRPH; Courtesy of Amy Watson (x5)
Alexander Zaitchik is a freelance journalist and the author of/The
Gilded Rage: A Wild Ride Through Donald Trump’s America/.
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