Dawson is among what one doctor called “waves and waves” of “long-haul” covid patients who remain sick long after retesting negative for the virus. A significant percentage are suffering from syndromes that few doctors understand or treat. In fact, a yearlong wait to see a specialist for these syndromes was common even before the ranks of patients were swelled by post-covid newcomers. For some, the consequences are life altering.

Before fall, Dawson, 44, a dermatologist from Portland, Oregon, routinely saw 25 to 30 patients a day, cared for her 3-year-old daughter and ran long distances.

Today, her heart races when she tries to stand. She has severe headaches, constant nausea and brain fog so extreme that, she said, it “feels like I have dementia.” Her fatigue is severe: “It’s as if all the energy has been sucked from my soul and my bones.” She can’t stand for more than 10 minutes without feeling dizzy.

Through her own research, Dawson recognized she had typical symptoms of postural orthostatic tachycardia syndrome, or POTS. It is a disorder of the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure and vein contractions that assist blood flow. It is a serious condition — not merely feeling lightheaded on rising suddenly, which affects many patients who have been confined to bed a long time with illnesses like covid as their nervous system readjusts to greater activity. POTS sometimes overlaps with autoimmune problems, which involve the immune system attacking healthy cells. Before covid, an estimated 3 million Americans had POTS.

Many POTS patients report it took them years to even find a diagnosis. With her own suspected diagnosis in hand, Dawson soon discovered there were no specialists in autonomic disorders in Portland — in fact, there are only 75 board-certified autonomic disorder doctors in the U.S.

Other doctors, however, have studied and treat POTS and similar syndromes. The nonprofit organization Dysautonomia International of a handful of clinics and about 150 U.S. doctors who have been recommended by patients and agreed to be on

In January, Dawson called a neurologist at a Portland medical center where her father had worked and was given an appointment for September. She then called Stanford University Medical Center’s autonomic clinic in California, and again was offered an appointment nine months later.

Using contacts in the medical community, Dawson wrangled an appointment with the Portland neurologist within a week and was diagnosed with POTS and chronic fatigue syndrome (CFS). The two syndromes have overlapping symptoms, often including severe fatigue.

Dr. Peter Rowe of Johns Hopkins in Baltimore, a prominent researcher who has treated POTS and CFS patients for 25 years, said every doctor with expertise in POTS is seeing long-haul covid patients with POTS, and every long-covid patient he has seen with CFS also had POTS. He expects the lack of medical treatment to worsen.

“Decades of neglect of POTS and CFS have set us up to fail miserably,” said Rowe, one of the authors of on CFS triggered by covid.

The prevalence of POTS was documented in an international survey of 3,762 long-covid patients, leading researchers to conclude that all covid patients who have rapid heartbeat, dizziness, brain fog or fatigue “should be screened for POTS.”

A “significant infusion of health care resources and a significant additional research investment” will be needed to address the growing caseload, the American Autonomic Society said in a recent .

Lauren Stiles, who founded in 2012 after being diagnosed with POTS, said patients who have suffered for decades worry about “the growth of people who need testing and treating but the lack of growth in doctors skilled in autonomic nervous system disorders.”

On the other hand, she hopes increasing awareness among physicians will at least get patients with dysautonomia diagnosed quickly, rather than years later.

Congress has allocated $1.5 billion to the National Institutes of Health over the next four years to study post-covid conditions. Requests for proposals have already been issued.

“There is hope that this miserable experience with covid will be valuable,” said Dr. David Goldstein, head of NIH’s Autonomic Medicine Section.

A unique opportunity for advances in treatment, he said, exists because researchers can study a large sample of people who got the same virus at roughly the same time, yet some recovered and some did not.

Long-term symptoms are common. A published in February in the Journal of the American Medical Association’s Network Open found that 27% of covid survivors ages 18-39 had persistent symptoms three to nine months after testing negative for covid. The percentage was slightly higher for middle-aged patients, and 43% for patients 65 and over.

The most common complaint: persistent fatigue. A published last month found that 80% of long-haulers complained of fatigue and nearly half of “brain fog.” Less common symptoms are inflamed heart muscles, lung function abnormalities and acute kidney problems.

Larger studies remain to be conducted. However, “even if only a tiny percentage of the millions who contracted covid suffer long-term consequences,” said Rowe, “we’re talking a huge influx of patients, and we don’t have the clinical capacity to take care of them.”

Symptoms of autonomic dysfunction are showing up in patients who had mild, moderate or severe covid symptoms.

Yet even today, some physicians discount conditions like POTS and CFS, both much more common in women than men. With no biomarkers, these syndromes are sometimes considered psychological.

The experience of POTS patient Jaclyn Cinnamon, 31, is typical. She became ill in college 13 years ago. The Illinois resident, now on the patient advisory board of Dysautonomia International, saw dozens of doctors seeking an explanation for her racing heart, severe fatigue, frequent vomiting, fever and other symptoms. For years, without results, she saw specialists in infectious disease, cardiology, allergies, rheumatoid arthritis, endocrinology and alternative medicine — and a psychiatrist, “because some doctors clearly thought I was simply a hysterical woman.”

It took three years for her to be diagnosed with POTS. The test is simple: Patients lie down for five minutes and have their blood pressure and heart rate taken. They then either stand or are tilted to 70-80 degrees and their vital signs are retaken. The heart rate of those with POTS will increase by at least 30 beats per minute, and often as much as 120 beats per minute within 10 minutes. POTS and CFS symptoms range from mild to debilitating.

The doctor who diagnosed Cinnamon told her he didn’t have the expertise to treat POTS. Nine years after the onset of the illness, she finally received treatment that alleviated her symptoms. Although there are no federally approved drugs for POTS or CFS, experienced physicians use a variety of medicines including , commonly prescribed for Addison’s disease, that can improve symptoms. Some patients are also helped by specialized physical therapy that first involves a therapist assisting with exercises while the patient is lying down, then later the use of machines that don’t require standing, such as rowing machines and recumbent exercise bicycles. Some recover over time; some do not.

Dawson said she can’t imagine the “darkness” experienced by patients who lack her access to a network of health care professionals. A retired endocrinologist urged her to have her adrenal function checked. Dawson discovered that her glands were barely producing cortisol, a hormone critical to vital body functions.

Medical progress, she added, is everyone’s best hope.

Stiles, whose organization funds research and provides physician and patient resources, is optimistic.

“Never in history has every major medical center in the world been studying the same disease at the same time with such urgency and collaboration,” she said. “I’m hoping we’ll understand covid and post-covid syndrome in record time.”

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It was a big step for Sam, a musician, a runner, a snowboarder and a taekwondo black belt who still identified as a boy at that point and had shared his secret only with his family and closest confidants.

The doctor said Sam was too young and thought it unlikely that any doctor would treat the Bozeman, Montana, teen for the same reason. Ten months later, on Feb. 20, 2016, Sam died by suicide.

“Sam was devastated,” said Adam Edelman, Sam’s father, recalling that visit with the doctor. “He lost hope.”

As legislatures meet across the U.S. to write new laws, at least are considering measures that would affect transgender athletes or those seeking treatment for gender dysphoria — the persistent and distressing feeling that one’s gender is different from the sex noted on the person’s birth certificate.

This wave of state legislation follows 79 anti-transgender introduced in statehouses last year. Nearly all were defeated.

Adam Edelman was motivated to tell Sam’s story as Montana lawmakers considered two proposals: criminalizing doctors who treat transgender minors and banning transgender student-athletes from competing under their self-identified sex. One Montana bill would have fined doctors who provided treatment with medicines like puberty blockers to anyone under age 18 up to $5,000; even a referral to another medical expert could threaten a doctor’s medical license. That bill was narrowly defeated in the Montana House of Representatives in January, 51-49.

The House passed a separate measure that would ban transgender athletes from competing on teams that don’t align with their sex at birth. The state Senate is considering the proposed ban, though opponents of the measure say there are no existing conflicts or disputes in schools that would make a ban necessary.

At least 10 states besides Montana are considering similar bills restricting transgender student-athletes this session: Connecticut, Hawaii, Iowa, Kentucky, Mississippi, New Hampshire, North Dakota, Oklahoma, Tennessee and Texas.

Montana’s bill to criminalize doctors for medically treating transgender children — which can still be revived with enough votes — is similar to bills being considered in at least 10 other states this year: Alabama, Iowa, Indiana, Mississippi, Missouri, Oklahoma, South Carolina, Tennessee, Texas and Utah.

This push across the U.S. is happening despite a decision by President Joe Biden shortly after his inauguration to lift LGBTQ restrictions in the military by . It also comes after North Carolina lost to boycotts following a 2016 law requiring people to use the bathroom that matches their birth gender. That law has since been repealed.

Laura Haynes, a retired faith-based clinical psychologist, is a major advocate of bills to ban medical intervention for transgender youth. Traveling from her home in California to testify before a Montana House committee hearing, she argued that social influences and media glamorization have led to a huge increase in youth identifying as transgender.

Most would eventually embrace their birth sex if adults just “watched and waited,” said Haynes, who also supports the discredited practice of conversion therapy for gays and lesbians.

She and proponents of the measures raise the specter of children undergoing dangerous and irreversible treatment.

“Experimental treatment affirming gender identity leads to puberty blockers, toxic wrong-sex hormones, organs devoid of function or pleasure, and potential mutilation of sex organs,” said Haynes.

But the treatments are not experimental, and surgeries are not approved for youths under age 18, said Dr. Colleen Wood, one of four pediatric endocrinologists in Montana.

Medical association protocols call for no medical intervention before puberty. If youths persist in feeling distressed about their bodies once puberty begins, an arduous process commences.

If both parents consent and a mental health professional agrees, a teen might be approved for a puberty blocker prescription. Blockers have been used for 40 years to treat children with early onset of puberty and are reversible, said Dr. Lauren Wilson, vice president of Montana’s chapter of the American Academy of Pediatrics.

Blockers are typically taken for five years before hormone therapy is considered. After teens have lived as the gender they embrace and undergone a comprehensive mental health assessment, they might be prescribed estrogen or testosterone.

If the hormones are stopped, the results are largely reversible, although some breast tissue may remain from estrogen, and a deepening of the voice and clitoris enlargement might be permanent from testosterone, said Wood. Infertility is a possible outcome.

of 55 peer-reviewed studies found that 93% showed gender transition improved the overall well-being of transgender people, while 7% found mixed results or no differences.

Of the bills involving transgender people that were considered last year in states — including medical treatment bans, sports bans and hurdles to changing sex designations on documents like driver’s licenses — all failed except a sports ban in Idaho. A federal district court later ruled the Idaho law unconstitutional and issued an injunction. The case is now before the 9th Circuit Court of Appeals.

The sports bans run counter to NCAA rules, which state that transgender females who were born male may compete on female teams if they have been taking hormones for one year. Laws that don’t follow NCAA rules could result in those states being banned from hosting championship games.

Montana Republican Rep. Braxton Mitchell, a 20-year-old freshman lawmaker and supporter of the Montana measure, was dismissive of potential consequences. “My House district is nearly 1,800 miles and a 27-hour drive from the NCAA” headquarters in Indianapolis, he said. “We will hold our own.”

Without legislative action, Mitchell said, he worried that women’s sports in the state will be ruined.

“Someone can wake up one morning and say, ‘I’m a man today,’ or ‘I’m a woman today,’ as a tactic to win in sports,” Mitchell said.

That’s not how it works, said Jaime Gabrielli, the mother of a child born female who identified as a boy as a toddler. When taken to the store to choose “big kid pants” during potty training, he ran to the boys’ section and chose SpongeBob SquarePants briefs. At age 4, he begged for a boy’s haircut and instead was given a pageboy with bangs. He “fixed” it by cutting off his own hair.

Presenting himself to the world as a boy transformed his life, said Gabrielli. For the first time, he didn’t dread school, didn’t avoid going to movies and social events, and didn’t experience as much extreme anxiety.

If the bills pass, civil rights groups have vowed to challenge them on constitutional grounds and as a violation of other legal protections. In addition to the equality issues these bills raise, civil liberty advocates questioned their practicality.

“It is unclear what would happen in Montana if someone disputes whether a person is in the ‘correct’ category,” said Alex Rate, legal director of the Montana ACLU.

Then there are the changing attitudes about children who question their gender. A father from rural Montana said in an anonymous letter to the Montana legislature that five years ago he would have supported both bills.

Those were the years he had tried to prevent his child, born a boy, from expressing identity as a girl.

“After I found my 12-year-old sitting in the dark with a handgun one night, I realized I need to learn from my daughter who she was, instead of me trying to tell her who I thought she was,” the man wrote.

Treatment, he added, saved her life. And he no longer supports bills like the ones before the Montana Legislature.

IF YOU NEED HELP: If you or someone you know is thinking about suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255, or use the online , both available 24 hours a day, seven days a week. also provides crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer and questioning youth at 1-866-488-7386.

[Editor’s note: In this story, we used the gender terms that the family of Sam Edelman used in describing the teen — and what they said Sam Edelman used before death. As in many newsrooms, KHN’s editorial style has evolved over time. We use the pronouns matching the gender that people identify with at the time of the story, not the label given at birth.]

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He and his two colleagues at the Spitzer-Miller Funeral Home have been working 12-15 hours a day, seven days a week, to keep up with the demand in the community of 26,000. The funerals are sparsely attended, which would have been unthinkable before the pandemic.

“We had a funeral for a younger man one recent Saturday, and not 20 people came, because most everyone was just afraid,” he said.

As covid-19 has spread from big cities to rural communities, it has stressed not only hospitals, but also what some euphemistically call “last responders.” The crush has overwhelmed morgues, funeral homes and religious leaders, required ingenuity and even changed the rituals of honoring the dead.

Officials in many smaller cities and towns learned from seeing the overflow of bodies during last spring’s first wave of covid deaths in places such as Detroit, where nurses at Detroit Medical Center Sinai-Grace Hospital alerted the media. They watched as New York hospitals and funeral homes marshaled refrigerated trucks to store bodies. More than 600 bodies of people who died in the spring covid surge because officials can’t find next of kin, or relatives are also sick or unable to pay for burial.

People like Dr. Robert Kurtzman, Montana’s chief medical examiner, took heed. Last spring, he worked with funeral directors and others to study the state’s morgue capacity. After looking at covid projections, the state arranged with the Montana National Guard to have 13 refrigerated semitrucks ready to dispatch anywhere in the state.

“We are already in a precarious position, and the projections present a scary proposition,” he said. “We need to be ready for worst-case scenarios.”

Chad Towner, CEO of St. Joseph Health System, which has two hospitals in northern Indiana, ordered two refrigerated semitrailers in April. For a time, things were relatively quiet. But the pandemic has hit.

“I told a friend who was a covid doubter that if my wife needed a bed today, I could not arrange one. That’s the dire situation we face here,” Towner said. “All our competitors in the area are in the same boat, and we’re working together instead of competing.”

Although the freezer trucks have not yet been needed, he worries that the sharp increase in cases, and those anticipated from holiday gatherings, will make last-resort measures necessary.

“We recently had four deaths in one afternoon,” said Towner. “A priest approached me to say he’d been asked to provide last rites to three patients in one hour.”

Moving bodies from the hospital morgue is a slower process than usual, he said. “Morticians and funeral homes are overflowing as well. Families that are sick or quarantined at the time of the loved one’s death often can’t work with us on a transfer, meaning bodies are here longer. The entire system is stressed to the tipping point,” said Towner.

Private enterprise has created a solution for smaller communities. In Bozeman, Montana, a specialty truck company has retrofitted trailers that can be pulled by an SUV or a pickup.

Acela Truck Co. has already sold hundreds of the pull-behind refrigerated units created in response to the covid pandemic. They range from 9 to 53 feet and have racks that each hold four body trays. “We’re very busy and have orders in all of the lower 48 states,” said CEO David Ronsen. Acela has partnered with Mopec, a Michigan autopsy supply company, to help sell and deliver the new product.

Billings Clinic in Montana also anticipated a flood of deaths last spring by reserving a semitrailer for delivery, if needed. The clinic, which has just two morgue spaces, has dealt with 80 covid deaths, including seven on the weekend after Thanksgiving.

Chief Nursing Officer Laurie Smith said the hospital is at capacity, despite adding beds by converting office space and building an addition. The hospital, which currently has 335 beds, so far has handled the additional deaths through what she calls a “sad partnership” with funeral homes, which have been quickly picking up bodies the hospital cannot store.

The hospital does its best to allow relatives to say goodbye, but that often involves family members standing at an interior window outside the patient’s room, using a computer tablet to communicate their last words.

That is just one way in which the rituals of grieving have changed during the covid pandemic.

Typical congregational hymns are pretty much gone, as are choirs.

“We are using mostly recordings, sometimes a soloist,” said Spitzer.

Funeral home directors who pride themselves on spending time comforting grieving families say they are so busy that some days they have to rush out from one funeral to begin the next one.

“Families are being robbed of the whole funeral rite experience and losing the support of having friends and family around them,” said Shauna Kjos-Miotke of Fiksdal Funeral Home in Webster, South Dakota.

Native communities have not only been among the hardest hit with covid illnesses and deaths, but their grieving rituals have been among the most seriously disrupted.

“Normally a funeral is a two- or three-day process with hundreds of people,” said Josiah Hugs, a Crow tribal member who is the outreach coordinator for Billings Urban Indian Health and Wellness Center. “Now there is no time to tell stories about the person, not a lot of singing and praying. I’ve been to three recent covid funerals, and everything was at the burial site, with maybe 30 people sitting in their cars and not getting out.”

Covid has even affected body disposal. A by the National Funeral Directors Association found that more than half of their members reported increased cremation rates due to covid. The NFDA also found that half its members have clients who have postponed services to hold a memorial later.

In the largely impoverished Hidalgo County, a Texas border area, county officials began using covid funds to help cover the burial costs for struggling families. Then they begin hearing of the emotional costs, including the anguish of videoconferenced funerals, such as for a family that had lost a husband, a mother and an aunt in one month. They wondered if there would be interest in an alternative way to honor the dead.

“We sent out a social media post asking if anyone wanted to post a photograph of a relative who died of covid if we created a county memorial page,” said county spokesperson Carlos Sanchez, who himself barely survived a bout with covid in July. “Within minutes, we got more than 20 emails. Several sent photos of multiple relatives. They want them to be remembered.”

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