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With loosened rules around remote prescriptions, a psychedelic-like drug has become a popular treatment for mental health conditions. But a boom in at-home use has outpaced evidence of safety.For Greg Rice, ketamine was transformative. The drug, approved decades ago to sedate patients during surgery, was increasingly being used to treat mental health conditions like his depression.Since his teenage years, Mr. Rice had cycled through a long list of medications. Searching for relief, he sometimes abused his prescriptions and experimented with LSD, psychedelic mushrooms and other illicit substances.At a particularly low point following a breakup a few years ago, Mr. Rice, 38, bought ketamine through back channels and injected it nightly for two weeks. The psychedelic-like journeys seemed to loosen the grip of his negative thoughts. “That was probably not the best way of coping,” he acknowledged, “but it got me through a really rough experience.”He continued using the drug periodically, he said, but was left hunting for a supply — until last year, when he discovered the freewheeling world of telemedicine.Mr. Rice went online and made an appointment with a doctor more than 2,500 miles from his California home whom he had never met. After a 30-minute video call, he received a prescription for a month’s supply. “I finally had an avenue to get pure medical-grade ketamine for cheap, sent to me over the mail,” he said.Not long ago, such an arrangement would have been illegal. Access to ketamine was tightly controlled by the Drug Enforcement Administration, which puts its risk of abuse one notch below that of opioids like oxycodone and fentanyl. While prescribing it for depression was allowed, patients needed to first meet in person with a doctor, and treatment was mostly limited to infusions in clinics.But in 2020, at the height of the pandemic, the Trump administration made it easier to treat patients by telemedicine, including remotely prescribing controlled substances. These regulatory changes, which have continued under President Biden, have made all manner of medical care, from management of chronic diseases like diabetes to substance abuse treatment, more accessible and affordable.While many patients have benefited, the rapid growth of remote prescribing and at-home use of various drugs has outpaced the evidence that doing so is safe and effective. As the gap between medical treatment and online shopping has narrowed, already-thorny debates over the proper balance between availability and safety have become increasingly urgent.The ketamine boom is a particularly fraught case study of this new reality because of the drug’s powerful effects and the vulnerable patients drawn to it: typically those with severe depression or other mental health conditions who have not responded to traditional therapies. The shift away from clinics has led many patients to take the drug more frequently and for longer periods of time — multiple times a week, even daily in some cases, and for months or years — despite scant research on safety.To better understand how this is playing out, The Times interviewed more than 40 patients who said their access to the drug was expanded through telehealth, spoke with two dozen doctors and other medical professionals, and reviewed scientific studies, case reports and data from researchers, government agencies and private analytics firms.Many of the patients said ketamine was life-changing, the only drug that had ever relieved their crushing symptoms. But some described serious drawbacks — including addiction and bladder damage — that have been documented for years among recreational users but have been largely played down by the drug’s medical proponents.On a Reddit forum devoted to ketamine therapy, an online community that has grown from fewer than 2,000 members in 2019 to more than 25,000 today, posts about misuse of the drug have appeared often enough that some members have pleaded for discretion, fearing a tightening of telehealth regulations.“I feel like some authority at some point is going to want to crack down and be like, ‘No, we don’t think this is OK,’” said one ketamine patient, Samuel Brooks, in an interview.Covid-19 exacerbated the nation’s mental health crisis and underscored the inadequacy of many existing treatments, accelerating a reconsideration of once-stigmatized psychedelics. Because the Food and Drug Administration approved ketamine as an anesthetic more than 50 years ago, federal rules allow doctors to prescribe it for other conditions as well, and its use for depression, anxiety and post-traumatic stress disorder was growing before the pandemic.With the rule changes in 2020, the at-home ketamine industry appeared practically overnight.Tech start-ups and individual doctors began offering medical services online, and so-called compounding pharmacies, which can make variations of approved drugs, found a market for  tablet and lozenge versions of ketamine, normally manufactured as a liquid and distributed in vials.Primed by glowing media coverage and aggressive advertising, many patients interviewed by The Times came to regard the drug — and its remote availability — as akin to a miracle cure with few risks.They can now pursue a treatment course not approved by the F.D.A., taking forms of the drug that are also not approved, produced by companies operating largely outside the agency’s oversight — all without comprehensive monitoring.Some found their way to online physicians like Scott Smith, a family medicine doctor who closed his practice in South Carolina in 2020 to focus full time on online ketamine treatment. In the past three years, Dr. Smith has remotely treated about 3,000 patients in 44 states, and has been featured in The Washington Post and on social media sites like YouTube and Reddit.Others sought out fledgling tech companies like Joyous, which offers rock-bottom pricing and daily dosing adjusted by text message, or a host of more established firms.Studies of recreational users have documented that ketamine — popularly known as K or Special K, with a reputation as a club drug — can be addictive and, when taken chronically in high doses, can cause severe bladder damage that in the worst cases requires surgical reconstruction of the organ. There are indications that abuse may also lead to cognitive impairment.Advocates of increased therapeutic use say those issues are exceedingly rare or nonexistent at the doses and frequencies commonly prescribed. But because treatment is remote and there is little mandatory reporting of side effects, it is nearly impossible to accurately gauge their prevalence.Patients who told The Times they began experiencing problems after starting ketamine included a 50-year-old man who must use a catheter to empty his bladder and a 37-year-old woman who wears adult diapers.More on the Coronavirus PandemicLeaving Millions on the Table: Stop-and-go federal funding floods public health agencies with cash during crises but starves them of funds afterward. In Mississippi, the pandemic showed the pitfalls of that approach.New Drug’s Long Odds: A promising new treatment quashes all Covid variants, but regulatory hurdles and a lack of funding make it unlikely to reach the United States market anytime soon.Dangers Remain for Seniors: For older Americans, the Covid pandemic still poses significant threats. But they are increasingly left to protect themselves as the rest of the country abandons precautions.N.Y.C.’s Mandate: New York City will end its aggressive but contentious vaccine mandate for municipal workers, Mayor Eric Adams announced, signaling a key moment in the city’s long battle against the pandemic.Some said they concealed problems from their telehealth providers for fear of losing access to the only treatment that had ever helped, while others acknowledged abusing their prescriptions, taking too much and in some cases dissolving and injecting the drug.On private online forums for medical professionals, accounts of bladder issues are common enough that some providers are becoming more restrained in their prescriptions, according to multiple people with access to the websites. Some psychiatrists at prominent institutions have published cautionary reports.The approaches of patients like Mr. Rice highlight the underlying tension. He acknowledged his “addictive tendencies” with ketamine, but his top priority in choosing online treatment was clear: “I wanted something hands-off.”Keith NegleyA Trip With RisksMany ketamine patients described the drug as a reset button for the brain. During treatment sessions, they experienced pleasant visualizations, sometimes accompanied by a sense of existing outside themselves and melding with the universe. Afterward, their daily problems seemed less weighty.The considerable hype surrounding ketamine stems in part from the drug’s ability to affect brain receptors that traditional antidepressants do not target. The psychedelic-like trip, many believe, is integral to the drug’s therapeutic effect.But for some patients who spoke to The Times, including a Tennessee cybersecurity manager and a former Pennsylvania factory worker, the profound experiences of their early sessions faded. Chasing the lost high, they sought increased doses, took multiple days’ worth at once or altered the medicine to release more of its payload.For others — a Utah data analyst, a California bartender and a Pennsylvania internet entrepreneur — ketamine treatment eventually meant dealing with a constant urge to urinate, often painfully, as well as other bladder ailments.The experiences of the dozens of patients who shared their stories with The Times encapsulate both the well-publicized promise of ketamine and the lesser-discussed risks.Driving the interest are early-stage studies showing that the drug can rapidly and dramatically relieve symptoms of depression. But there has been little research on how to maintain the improvements and even less on whether prolonged treatment is safe.When discussing the risks, prescribers often insist there is a sharp line between chronic abuse and medical use.“That happens in people that abuse ketamine and use more than a thousand milligrams on a daily basis,” Dr. Smith, the online physician from South Carolina, said of bladder damage. “We’re treating most people with 200 milligrams every three days. We haven’t seen anybody that’s had that problem.”Still, two of Dr. Smith’s former patients said in interviews that they experienced serious issues that required care from a urologist. Both said they did not tell Dr. Smith because they felt addicted to the drug and wanted to continue their prescriptions, which they were misusing.Among the 12 patients who described bladder problems, most saw their symptoms resolve after they stopped taking ketamine. Most said their doctors couldn’t conclusively peg the cause of their problems but identified ketamine as the likely culprit.Three patients said their troubles persisted. One of them, a man living in Utah, recounted the painful daily ritual of using a catheter to empty his bladder but expressed no regrets. Without ketamine, he said, he might have killed himself.For other patients, a similar calculus led them to stay on ketamine despite the harm. All of them spoke on the condition that their full names not be published, for fear of losing access to the drug or affecting their job prospects.Sarah, a 30-year-old Californian, said she had tried more than a dozen psychotropic medications and undergone more than 30 electroconvulsive therapy treatments before finding ketamine. Now, between periodic infusions at a local clinic, she takes tablets at home that she gets through an online service.But she has not told either provider about her worsening bladder issues. Her urologist may soon need to inject Botox into her bladder, a treatment for certain urinary problems.“It’s kind of a lot to admit that you have bladder issues as a 30-year-old, mostly because you’re causing it,” she said.Many ketamine proponents minimize the potential for addiction and abuse. Dr. Smith said that of the thousands of patients he had treated, only two or three had misused the drug, and that he got them help. He said he had reported one patient to the D.E.A. tip line and also stopped treating a handful of patients after learning they were taking more than prescribed.“I have to go through hoops to be licensed to treat people with controlled substances,” he said. “So I comply with all federal and state laws regarding that. And part of my daily job is to look for people that are abusing the medicine or diverting the medicine.”Three of Dr. Smith’s patients told The Times they abused their prescriptions and concealed it from him. Two others described dissolving the tablet or lozenge and administering it rectally, a practice known as boofing that some believe produces a faster and more intense high.Abuse is “absolutely unacceptable,” Dr. Smith said, but “just because there’s a handful of people that don’t follow directions, that does not mean that this medicine is not safe for the rest of the population of competent adults.”Six patients of various medical providers said they came to crave the ketamine trip so much they began to use the drug compulsively. The more they took, some found, the more they needed.“It’s pretty powerful,” said a 59-year-old woman from Philadelphia who sometimes takes more than prescribed, runs out early and tries to buy the drug on the dark web.A 41-year-old man from Nashville who has battled depression since childhood described the drug as his “superpower.” People liked him more, he had more energy and “I got more stuff done.”After undergoing infusions at a clinic, he said, he transitioned during the pandemic to taking small lozenges called troches at home. He started at 100 milligrams a day, then took 200, then 400. His provider would not increase the dose any further, so he now exhausts his monthly prescription early — taking 800 milligrams a day.Speaking on a Tuesday afternoon in December, he said he had just received a performance review at the company where he works in cybersecurity.“My boss was like, ‘You’re not meeting expectations,’” he said.“I’m using it right now,” he continued. “Since the start of this call, I’ve taken 400 milligrams.”Keith NegleyIn the Absence of ScienceWhile proponents of at-home ketamine stress the lack of scientific studies showing that long-term medical use might be harmful, the converse is also true: There are few studies showing that it isn’t. Some urge caution.“We know at a certain point you will get both the neurotoxic and the bladder-toxic effects — we just don’t know at what level,” said Dr. Gerard Sanacora, a psychiatrist and leading ketamine researcher at Yale University.In the absence of data, some medical professionals said they were becoming more conservative in their prescribing because of anecdotes in published case reports or online forums.Professional groups have developed informal guidelines that emphasize catching symptoms early, reducing the dose and spacing out treatments. But some at-home providers are pushing in the opposite direction, viewing ketamine as just another medicine to be taken regularly.“I would be worried about chronic usage” said Dr. Adam Howe, a urologist at Albany Medical Center who advises a group developing treatment guidance. Damage is avoidable with proper safeguards, he said, but “common sense would tell you, if you’re to use this every day for years on end, then at a certain point, you’re going to be damaging your bladder probably.”The literature on addiction and abuse among medical users is also thin and inconclusive. Supporters point to studies indicating that patients on ketamine rarely, if ever, have those issues. Others note a pattern common in drug development: an initial overestimation of benefit, followed by more tempered results and recognition of previously undetected harm.“We really don’t know what sort of addiction we might be causing,” said Dr. Noah Capurso, a Yale psychiatrist who co-wrote a case study of a patient whose at-home, prescribed use rapidly escalated until he was involuntarily admitted to a psychiatric unit.Doctors at the Baylor College of Medicine and the Mayo Clinic have published similar accounts. In one case, after a 52-year-old man who regularly took more than prescribed had to be hospitalized, his family said the drug was “ripping his life apart” and he had “no control over it.”Keith NegleyProduction Is BoomingFor years, mental health clinics have administered the F.D.A.-approved liquid form of ketamine that doctors also use to sedate patients in surgery. But at-home treatment created demand for a version that was less potent and easier to take — something not available from drugmakers.Enter a uniquely positioned industry: compounding pharmacies.These specialized companies operate in a murky regulatory space somewhere between a corner drugstore and a pharmaceutical manufacturer. They can produce variations of approved drugs but do not have to follow the same quality-control rules as drugmakers.Most compounding pharmacies do not have to notify federal regulators when they learn of a patient experiencing a problem, and they are rarely, if ever, inspected by the F.D.A. In many cases, the agency may not even know they exist.The companies were originally granted legal leeway to produce small amounts of drugs for patients with particular needs, such as an allergy to an ingredient in a commercial product or an inability to swallow a pill. But some have dramatically grown their production capacity and reach.Companies that once served primarily local customers now ship their products across the country as the ketamine boom has presented an alluring opportunity.“It’s become the new buzz in this space,” said Jeanine Sinanan-Singh, chief executive of Vitae Industries, which sells a machine that compounding pharmacies can use to produce doses at a faster clip than with other methods.The size of this new market is difficult to gauge. The number of mental health patients prescribed ketamine more than doubled from just under 15,000 in 2016 to nearly 30,000 in 2021, according to data from the analytics company Komodo Health. But the actual numbers are likely to be far higher because the data is drawn from insurance claims, and plans tend not to cover the drug’s off-label uses.Most compounders do not report the amount of ketamine they produce to the F.D.A., and the agency refuses to disclose data from those that do, asserting that it is confidential commercial information. In a statement, the F.D.A. noted its limited authority over most compounding pharmacies and said it “continues to monitor reports of adverse events or other complaints involving compounded ketamine.”Some compounding pharmacies have gone public with stepped-up efforts to attract customers. In social media posts and mailers to doctors, they extol the benefits of ketamine, and some offer to connect patients with prescribers. They promise fast shipping and low prices. Compounders can formulate troches from inexpensive generic ketamine and charge between $50 and $100 for a month’s supply, a fraction of the cost of receiving treatment at a clinic.After a deadly meningitis outbreak was linked to one compounding pharmacy in 2012, the F.D.A. sought to impose greater oversight on companies that mailed drugs to other states in large volumes, but the industry has successfully stalled the restrictions. As a result, most of the largest ketamine compounders can ship across the country with little federal scrutiny.Scott Brunner, chief executive of the Alliance for Pharmacy Compounding, a trade group, said that the F.D.A.’s proposals constituted overreach but that the industry was open to some reporting of interstate shipments and adverse events. “Compounding pharmacists’ concern is always the health and safety of their patients,” he said.Just one of the major at-home ketamine compounders appears to have registered with the F.D.A., and the resulting inspections have turned up serious quality problems, according to agency records.That company, Empower Pharmacy, ships to all 50 states. Three times over the past five years, F.D.A. inspectors have visited its Houston production site and cited violations, including inadequate monitoring for contamination, insufficient investigations of batches that failed quality tests and a failure to properly report adverse events.During a visit last summer, inspectors found that the company had been producing ketamine nasal spray for more than two years without ever conducting potency tests to ensure the product had the correct strength.Empower did not respond to questions from The Times. In a letter to the F.D.A. after last year’s inspection, the company said it had been “steadily improving its management and corporate governance” and “restructuring its manufacturing, quality and compliance departments for greater oversight.”Keith NegleyDaily Doses at Bargain RatesCost concerns led Chad Curl to the telehealth start-up Joyous. After trying seemingly everything — prescription pills, electroconvulsive therapy, an implanted nerve stimulator — he found relief from depression at a clinic administering a closely related drug, esketamine, which is a nasal spray approved by the F.D.A. as a mental health treatment. But it cannot be taken at home, and he could afford only a few sessions.Searching online for alternatives last fall, he found an apparent bargain: $129 a month, ketamine included. He filled out Joyous’s intake questionnaire, had a 20-minute virtual appointment and received a prescription, all in the same night.“I was like, ‘Wow, I didn’t even plan on this today, and here we go,’” he said.Joyous is the new kid on the at-home ketamine block, a reflection of where market forces and scant regulation have taken the fledgling industry. The company has sought to distinguish itself by promoting its tech-driven, customizable treatment plans, but the real draw for many patients is its pricing.“I signed up for Joyous, if we’re being honest, just because of the price,” said Francisco Llauger, who, like Mr. Curl, found in-clinic treatments effective but too expensive.Joyous illustrates a reality of how at-home ketamine has evolved: Patients with some of the most serious and complicated mental health challenges are turning to some of the most hands-off treatment, according to The Times’s interviews.The company has carved out its place with a novel approach: Instead of prescribing higher doses to be taken once or twice a week, Joyous offers lower doses to be taken daily.Melding the argots of Silicon Valley and self-care, Joyous delivers treatment primarily by text message, replete with exclamation points and emojis. Each morning, patients receive a questionnaire on their phones asking about symptoms and side effects, and each evening, they get a text with the next day’s recommended dose.“Our algorithms use all of this information to tailor the protocol exactly to your brain and body’s needs,” Sharon Niv, co-founder and chief of customer experience, says in a video.In written responses to questions from The Times, the company said its general treatment approach “has been adapted and used by providers nationally and internationally” for more than five years and its internal data indicated that “this medicine is highly effective for both anxiety and depression.” It declined to provide details about how its technology works. The company says lower doses translate to lower risk. Yet most of the eight Joyous patients who spoke with The Times said their doses reached the maximum the company would prescribe within weeks. Some providers who generally support at-home treatment expressed concern that taking ketamine every day, even at lower doses, could heighten the risk of tolerance, addiction and bladder problems.“Patient outcomes are our highest priority,” the company said in its written responses. “Joyous takes patient safety and risk mitigation very seriously.”

Published1 hour agoShareclose panelShare pageCopy linkAbout sharingImage source, Vivium GroupBy Giancarlo RinaldiSouth Scotland reporter, BBC Scotland news websiteIf you say them quickly enough they could almost sound the same – Hogeweyk and Hawick.In a few years’ time, however, they might have more in common than a similar pronunciation.Following visits to the “dementia village” in the Netherlands, Scottish Borders Council (SBC) has plans for two developments in Hawick and Tweedbank.Jannette Spiering, a founder of the Hogeweyk site, said the concept was one which had taken many years to develop.She has been working with the Vivium care group for 40 years and in 1993 started on a vision for normalising care for people with severe dementia.Hogeweyk was commissioned in 2002 and opened six years later.”The whole fact is that we were not satisfied by existing care models who really work from the viewpoint of medical care,” she said.”We thought we could do better by focusing also on social care in addition to medical care.”She described it as a “real cultural shift” in how care and housing were provided.Image source, paul tolenaar”It’s about a care model and it’s about the built environment,” she said.”We have 27 houses and in each house we have seven residents, in total we can provide for 188 residents.”She said visiting parties to the site – of whom there have been hundreds – all had their view of care “radically changed”.”The built environment is completely different from all institutional nursing homes as we know them,” she said.”The Hogeweyk is about small-scale living, which means people living together – seven in a house – together with care staff.”They run their household – or actually care staff run the household and those who live there will participate.”Image source, Vivium GroupShe said it was about reducing “big wards of often 30 people” into “normal environments”.”Living together with seven people, is one of the biggest changes,” she said.She said another difference was “having the freedom to go wherever you want whenever you want, without assistance or being watched by a carer”.”The Hogeweyk is a big, big neighbourhood but it’s still a safe environment, because there is an entrance which is watched,” added Ms Spiering.”Within that neighbourhood people are free to go wherever they want, and we want to integrate society with our neighbourhood as much as possible.”Image source, Vivium GroupTo that end, they bring visitors from neighbouring areas into the Hogeweyk.”We try to lift the stigma of dementia, because it’s highly stigmatised,” she said.”Before, we hid people and used the excuse that they cannot be part of society anymore.”But I think it’s the other way around – society doesn’t know how to have contact with people with dementia, because sometimes people ask for a different approach and then you have to have some knowledge of what dementia means.”She said it was simply about treating people as normally as possible.Image source, Vivium Group”If you step inside the Hogeweyk, it’s just another neighbourhood,” she said.”You will not even recognise who is a resident, or who is a volunteer or who is a family member.”Normalising the environment is a big, big help in lowering the stigma.”She said it also had a positive effect on the residents who had an average age of about 84.”If you lock them up in a facility which looks like a hospital, then people will start to behave like they are in a hospital,” she explained.”They become anxious, and they want to get out because they do not recognise that environment, and they constantly think that they are ill.”She said that providing a “normal environment and a normal house” and also offering a social life could make a big difference.”That helps in having a good life and having a meaningful one,” she said. “So normalisation is the key word, I think.”Image source, Vivium GroupMs Spiering said she was “very curious” to see how SBC’s multi-million pound plans unfolded.It recently endorsed £11.2m plans for the Stirches area of Hawick which could accommodate 60 residents.A similar development in Tweedbank would replace two more conventional care homes.The local authority stressed that Hogeweyk was just one model which had inspired its plans.It has also been working with the Dementia Services Development Centre at Stirling University to support its design plans.Image source, Vivium Group”Importantly, we need to ensure we are meeting the needs of the people of the Borders,” it said in a statement.”The care villages will be home to a number of clients with varying and very different needs and we are keen that the designs will ensure flexibility of use both now and in the future.”It has promised further community engagement and consultations as the plans progress.All of which is being watched with interest in the Netherlands.”I really hope that they will succeed in creating something which fits the Scottish culture,” said Ms Spiering.Related Internet LinksScottish Borders CouncilThe BBC is not responsible for the content of external sites.

Billions of people live with the infection, but there has been scant progress for treatments and tests.When Lauren went to her doctors with stinging clusters of sores on her genitals, she assumed the pain was from a urinary tract infection. But at the OB-GYN, her doctor swabbed the bumps and told her that the rash was herpes. “No,” she remembered responding. “It’s not.”At the time, Lauren, who asked that her last name be withheld in order to talk about personal health issues, was a 19-year-old college student. She was in a two-year monogamous relationship with her second-ever sexual partner — a guy who occasionally dealt with an errant blister on his lip.They hadn’t known that oral herpes could induce cold sores, and that HSV-1, the virus that causes oral herpes, could be transferred to the genitals. Lauren’s boyfriend was convinced that she had cheated on him, and he broke up with her, she said.Lauren became withdrawn and almost failed out of college. “You think, Why does anything even matter anymore?” she said. “I’m never going to date. I’m never going to have a boyfriend.”That was in 2013. Over the last decade, Lauren has had only a few additional outbreaks, none as painful as her first. The mental strain — the depression she fell into after the diagnosis, the fear that future partners wouldn’t accept her — has been, by far, the hardest part of managing the disease. “It attacks your self-worth,” she said.Herpes is extremely common: The World Health Organization estimates that 3.7 billion people live with HSV-1, some oral and some genital. And cases like Lauren’s, where HSV-1 spreads to the genitals during oral sex, have sharply increased over the past two decades, said Dr. Jonathan Zenilman, a professor of medicine at Johns Hopkins University School of Medicine who specializes in sexually transmitted infections.But herpes isn’t a top priority for researchers, said Dr. Larry Corey, a professor and virologist at Fred Hutch Cancer Center in Seattle who has studied the virus. It isn’t even the top priority among those who study sexually transmitted infections, he added. “The disease has been sort of ignored by both the pharmaceutical industry as well as the medical research establishment,” he said.There are several potential reasons for this, experts theorize, including the relatively mild physical symptoms for most patients, clinicians’ reluctance to discuss sexual health and how hard it is to develop a vaccine for herpes.“The fact that a lot of the toll is psychological makes physicians not that interested in it,” said Dr. Anna Wald, a clinical virologist and a professor of medicine at the University of Washington School of Medicine.There has been little progress on more accurate tests, vaccines or additional treatments over the last few decades, Dr. Wald said. Part of the challenge is that the herpes virus can hide inside neurons that are shielded from the immune system, making the body’s immune response insufficient at eradicating the virus, she said — that’s why herpes remains in a person’s body for life. Vaccine attempts, so far, have not stimulated an immune response that can control the virus or prevent infection, she said.If a patient does not have symptoms, doctors typically diagnose herpes with an antibody test that is frequently inaccurate. Up to half of positive commercial test results could be false, according to past research. There is another antibody test, called the herpes Western blot, that scientists consider the gold standard in diagnosing herpes — but the test is only available through the University of Washington, which can be cumbersome and expensive for patients to obtain. Testing is typically reliable when a patient has symptoms; doctors can swab a lesion and run a highly sensitive molecular test.The U.S. Preventive Services Task Force doesn’t recommend routine genital herpes screenings for people without symptoms, in part because false positive rates are so high. On Tuesday, the task force reaffirmed its recommendation. In a related paper, a group of doctors wrote that the recommendation was, in part, based on “psychosocial harms” associated with false positives on herpes tests.And so the virus continues to spread essentially unchecked — exacerbated by just how ineffective the most widely available tests for herpes are, said Terri Warren, a nurse practitioner who has researched herpes. As cases circulate, patients are left grappling with a diagnosis that can be psychologically devastating, Dr. Zenilman said.“You can control the symptoms,” he added. “But lots of people feel stigmatized, dirty.”How herpes got sidelinedHerpes can be severe in certain cases: Babies can contract neonatal herpes from their mothers, putting them at risk for severe complications and even death. For people who are immunocompromised, outbreaks can be more prolonged and painful. In the vast majority of cases, though, people will have very mild symptoms, and many will have none. That’s part of the reason the infection is so pervasive: People pass it onto partners without knowing they have herpes. Those who contract HSV-1 may develop blisters on or around their mouths or, in some cases, on their genitals. HSV-2, the other predominant strain, is usually characterized by one or more lesions around the genitals or the rectum. In the United States, around one in six people between the ages of 14 and 49 has genital herpes, and over half of adults have oral herpes.Antiviral medications help reduce the amount of the virus a person sheds, lowering the chance that someone with herpes will pass it on to a sexual partner. Some patients take antivirals daily; others only take medication when they have an outbreak. But the risk of spreading herpes is never zero. The disease lingers in the body, putting the onus on patients to disclose their diagnosis to anyone with whom they have intimate contact.When Lauren started dating after her diagnosis, she found herself staying in relationships for longer than she might otherwise, scared nobody else would want to be with her. “I thought I was going to die alone,” she said.Brittany, 29, who asked that her last name be withheld in order to discuss her personal health, only thinks about her HSV-2 when she scrolls through a dating app. In the two years since she was diagnosed, she’s only had one outbreak. Still, when she looks at each profile, she wonders how the man would respond to learning about her diagnosis. “I just worry so much that people are going to judge me,” she said. “That no matter how I present it to them, I’ll still face rejection. That weighs heavily on me.”Some men have told her, flat-out, that they would never date someone with herpes, but what bothers her, too, are the ones who say, “I’m so sorry this happened to you.”“I don’t want people to feel sorry for me,” she said. “I wake up every day and I’m fine.”Scientists have worked on herpes vaccines in fits and starts since the 1970s, said Dr. Harvey Friedman, a professor of medicine at the University of Pennsylvania Perelman School of Medicine who has studied the disease for over 40 years. But past attempts have failed, for reasons researchers are still trying to uncover.Because herpes has been around for so long, the viruses have evolved alongside us, making them more difficult to eradicate, said Christine Johnston, an associate professor at the University of Washington School of Medicine who has studied herpes. There are new vaccines under development. Dr. Friedman is working with BioNTech on an HSV-2 vaccine candidate that was given to the first human subject in December. But none are in late-stage clinical trials, said Dr. Ina Park, a professor of family and community medicine at the University of California, San Francisco, and author of “Strange Bedfellows: Adventures in the Science, History, and Surprising Secrets of S.T.D.s.” “There’s nothing anywhere close to prime time,” she said.‘One of the biggest secret societies’When Ella Dawson, 30, contracted genital HSV-1 in college, she started to post openly about her diagnosis on social media. To her surprise, people came out of the woodwork to share their stories — friends, relatives, even a cashier who worked at the grocery store on campus. Many told her that they had never disclosed their diagnosis to anyone other than a sexual partner.“It’s one of the biggest secret societies in the world,” said Ms. Dawson, a novelist and writer who often speaks publicly about her experience with herpes.Courtney Brame, 34, started the herpes education advocacy organization and podcast Something Positive for Positive People after his own HSV-2 diagnosis. He’s seen how the disease “completely shatters a person’s identity,” he said, partly because of how central sexuality can be to someone’s self-worth. “They don’t feel like they have anything to contribute to a relationship now, just because they have herpes,” he said. “It’s like, ‘Who’s going to want me now that I have this?’”Mr. Brame has seen this in his own life. He was once messaging a woman on Tinder who brought up her struggle with chronic asthma; when he disclosed his own chronic condition, she stopped responding. But more often than facing rejection, when he shares his diagnosis, he said, he gets a different response: Women share that they, too, have herpes.Herpes stigma stems in part from the idea that people with the infection have done something “wrong,” Dr. Park said. But you can exercise every precaution and still get it, she added — condoms do not entirely prevent transmission, and you don’t even need to have penetrative sex to contract the virus.Though condoms can reduce the risk of transmission, not everyone with herpes will use a barrier method in long-term, monogamous relationships. In 2021, Something Positive for Positive People conducted a survey of over 1,000 people diagnosed with herpes; around 66 percent said a partner had consented to sex without a condom or other barrier method. And there is little research on how the virus spreads between women who have sex with women, Dr. Park said.Medical providers, in general, often don’t receive extensive education on talking to patients about sexual health, Dr. Johnston said. When it comes to herpes in particular, “health care providers can be really insensitive about it and minimize it,” she said. “This is thought of more as a nuisance than a serious infection.”“Clinicians don’t want to deal with this,” Ms. Warren said. “It involves people talking about sex. They’re crying, they’re going to have to talk about various specifics like is oral sex OK, is anal sex OK — I don’t think they want to go there,” she said.Without support from doctors, or medical innovations to cure the infection, people with herpes are left “dealing with two viruses at the same time,” as Ms. Dawson put it. “You’re dealing with the physical symptoms of the virus,” she said, “and you’re dealing with the mental strain.”

The Democratic senator from Pennsylvania is the latest public figure to disclose his mental health struggles, an indication of growing acceptance, though some stigma remains.Lynn Rivers, a Democrat from Michigan, opened up about her diagnosis with bipolar disorder during a radio call-in show when she first ran for Congress. Her opponents had been hinting she had mental health problems. She decided, spur of the moment, to let it out.“Finally, I just said, ‘Are you asking me if I have depression? Yes, and so do thousands and millions of other people,’” she recalled. “I was like, ‘OK, here we go. The ball is thrown at you, just hit it.’ And so I did.”That was 1994. Ms. Rivers was elected, despite a Republican tidal wave, and served four terms.Now another Democrat, Senator John Fetterman of Pennsylvania, has announced that he has entered a hospital to be treated for clinical depression. Politicians of both parties are praising him for his openness. Mental health experts say he is a powerful symbol — especially for men, who are less likely to seek treatment for depression and suffer higher rates of suicide.Yet the stigma around mental illness remains strong — especially in politics, where questions about temperament can determine a candidate’s electability. Mr. Fetterman and others face a continuing challenge: How much do they really want to say?“We’ve come a long way; people are willing to say they have a diagnosis or that they’re going to therapy,” said Patrick J. Kennedy, a scion of the political Kennedy family, who disclosed his treatment for bipolar disorder and drug abuse when he was a congressman from Rhode Island. “But we’re still not in a place where people are comfortable saying any more than that. And really the question with Senator Fetterman is: How much is he going to disclose?”Clinical depression, also called major depression, is a severe form of the disease. Symptoms may include feelings of sadness, hopelessness or guilt; angry outbursts; loss of pleasure in ordinary activities; fatigue; anxiety; reduced appetite; and thoughts of suicide. In recent years, there have been great strides in treatment.So far, Mr. Fetterman’s staff has not been explicit in public about his symptoms or his treatment. In announcing on Thursday that he had admitted himself to the Walter Reed National Military Medical Army Center, the senator’s office said that he had suffered depression on and off throughout his life, but that it had only become severe in recent weeks.Mr. Fetterman, a freshman, has had difficulty adjusting to Senate life. He is also a stroke survivor who requires significant accommodations, including closed captioning devices, to communicate. Experts say that about a third of people who suffer strokes also suffer depression.“After a stroke, people inevitably — and I think Senator Fetterman is an example of this — have to adapt to a new life, particularly if there are impairments,” said Dr. Paul S. Appelbaum, a professor of psychiatry, medicine and law at Columbia University and a past president of the American Psychiatric Association. “That can be hard, and can be a contributor to the incidence of depression.”Mr. Fetterman is not the first Washington politician — or even the first member of the Senate — to be open about a mental health struggle.A Divided CongressThe 118th Congress is underway, with Republicans controlling the House and Democrats holding the Senate.A New Normal: The eruptions of Republican vitriol against President Biden during his State of the Union address underscored a new and notably coarse normal for the G.O.P.-led House.G.O.P. Legislative Agenda: Weeks into their chaotic House majority, Republican leaders have found themselves paralyzed on some of the biggest issues they promised to address.Social Security: Defending his plan to re-evaluate the federal retirement program, Senator Rick Scott of Florida is fueling a nasty feud among Republicans with implications for both the Senate and national politics.Bernie Sanders: After two unsuccessful runs for the presidency, the Vermont senator now leads the Senate health committee. The job gives him sweeping jurisdiction over issues he cares about.Senator Tina Smith, 64 and a Democrat from Minnesota, shared her diagnosis of depression in a speech on the floor of the Senate in 2019, describing seeking care as a college student, and then as a young mother. Two House Democrats — Representative Ruben Gallego of Arizona and Seth Moulton of Massachusetts, both veterans of the Iraq War — have spoken about seeking treatment for PTSD.But it can be hard, even today. Mr. Moulton served for six years before talking about his experience. Mr. Gallego disclosed his treatment early in his career in Congress when a reporter asked about it. He said critics on social media still harass him.“They accuse me of being a baby killer in Iraq, and that’s why I have PTSD, because of guilt,” he said. “People have said that my PTSD is rage-filled, and that I can’t be trusted in government. They have certainly tried to weaponize it.”Older Americans well recall the experience of Thomas Eagleton, who was forced to withdraw as George McGovern’s running mate in 1972 after his past hospitalization for depression, and treatment with electroconvulsive therapy, became known.Social scientists say there is demonstrable evidence that the public is growing more accepting of people with depression. Bernice Pescosolido, a professor of sociology at Indiana University and the lead investigator on the National Stigma Study, which tracks public attitudes toward mental illness, said the shift in public sentiment has been “dramatic,” but it only goes so far.Dr. Pescosolido’s research shows that between 1996 and 2006, people’s attitudes about what causes depression changed significantly, with more people seeing it as “a disease rather than as a moral failure.” But there was no change in stigma, as measured by people’s willingness to associate with depressed people, such as marrying into the family of a depressed person.There was, however, a significant drop in stigma toward people with depression between 2006 and 2018. During that time, she said, advocates shifted tactics. Instead of likening mental illness to physical illness, she said, they began encouraging people to talk about their own experiences.“The narrative change meant that more people were talking about it and sharing about it,” she said. “I think there’s no better example than people like Fetterman.”Political strategists of both parties say that if Mr. Fetterman recovers and can function as a senator, his future in politics will not be hurt.“I don’t think that the fact of having depression or dealing with a mental illness in and of itself would impede his career,” said David Axelrod, a Democratic strategist whose father’s death by suicide has led him to advocate better mental health treatment. “But if people come to believe that he has disabilities that would prevent him from doing his job, that is a different thing.”Whit Ayres, a Republican strategist, agreed, saying, “It’s all about whether he is able to do the job to which he was elected.”One Republican candidate who talked often about his struggles with mental illness, Herschel Walker, lost his bid for the Senate in Georgia. But Mr. Walker, who asserted he had “overcome” dissociative identity disorder, formerly known as multiple personality disorder, faced other hurdles as well, including allegations that he had paid for abortions for two girlfriends (he was running as an abortion opponent).For years in politics, candidates took pains to hide their struggles with mental health. Ms. Rivers, who came up through Michigan’s state legislature, recalled elected officials who “would prefer to be thought of as alcoholic, because it was more socially acceptable.”Lynn Rivers was elected to the House in 1994 after serving in Michigan’s state legislature. In those days, she said, some elected officials “would prefer to be thought of as alcoholic, because it was more socially acceptable” than mental illness.Maureen Keating/CQ Roll Call, via Associated PressStaff members become adept at hiding evidence and concocting alternate explanations for officials who required hospitalization for mental illness. And public figures themselves learned to hide.Robert A. Antonioni, who served for 20 years in the Massachusetts state legislature, used to dress atypically in shorts and a baseball cap and drive about 20 miles to another town to pick up a prescription for antidepressants, he said.“I thought, I know the people in my town, and the people at CVS, they would be, like, ‘Bob was in here today picking up his Zoloft,’” he said. “The psychiatrist who prescribed it to me said, ‘Bob, there are so many people that take this.”Mr. Antonioni began talking openly about his depression in 2003, after a newspaper reporter asked why he was working on suicide prevention. He told the reporter about his younger brother, who had died by suicide, but demurred when she asked whether he had ever had similar thoughts. He hung up, but thought better of it, and called her back.“Eventually, I just thought, ‘I’m not being honest,’ ” he said. “I remember the reporter being like, ‘You know, it’s going to be in the paper, Bob.’”Mr. Kennedy, who is now a prominent advocate for mental health treatment, said he was “outed” in 1991 during his first term as a state representative when someone who had been in treatment for substance abuse with him sold his story to The National Enquirer. He survived re-election and went on to win his House seat in 1994, the same year as Ms. Rivers.In 2000, when Tipper Gore, then the second lady, came to Rhode Island to campaign for him, he stood on a stage with her and told his constituents about his bipolar disorder. It was an unplanned announcement.“I was still very reticent to say much about it,” Mr. Kennedy said. “And even when I did talk, I was trying to be very calculating — only disclose as much as I thought politically I could survive.”Patrick J. Kennedy, right, in 1994, the year he was elected to Congress as a representative of Rhode Island. In 2000, he revealed his struggles with bipolar disorder.Maureen Keating/CQ Roll Call, via Associated PressThe fear at that time was of being seen as weak, or flawed in a basic way.Mr. Moulton said he shared his diagnosis with just one or two close advisers. Their advice to him? “Better not talk about it.”On Thursday, after Mr. Fetterman’s office announced his hospitalization, Mr. Gallego took to Twitter. “There is never any weakness in seeking help,” he wrote, coupling his message with two emojis showing flexed biceps.Depression is a very individual disease that will affect roughly one in five Americans during their lifetimes, Dr. Appelbaum said. Some people have one episode, receive treatment, and go on. Some people may have recurring episodes.Treatment at first typically consists of a combination of medicine and psychotherapy — often cognitive behavioral therapy, in which patients learn how to control their thoughts. If that does not work, there are also more aggressive treatments. Studies show that electroconvulsive therapy, which involves a brief electrical stimulation of the brain while a patient is under anesthesia, is effective in between 80 and 90 percent of patients, Dr. Appelbaum said.Some officials who have spoken openly about their experiences with mental illness said they have found it freeing. Ms. Smith, the senator, said she decided to go public after the subject came up in a discussion with senior staff members, and she realized how rare it was for politicians to describe this part of their lives.“There was power in me telling that story,” she said.Speaking out also gives politicians control over their own narrative, enabling them to time the disclosure and choose the outlet. In 2019, preparing for what became a brief presidential run, Mr. Moulton revealed in a speech that he had consulted a therapist for PTSD.“I thought there was a good chance that it would end my career,” he said. Instead, he added, “to this day, people come up to me all over the country and say thank you.”

To patients of P. Ashley Wackym, a surgical otologist-neurotologist at Rutgers Robert Wood Johnson Medical School, a diagnosis of superior semicircular canal dehiscence (SSCD) can feel like a death sentence.
SSCD, a type of “third window syndrome,” is caused by an abnormal third mobile window of the inner ear. Normally humans have two of these windows. When a third “window” is present — at birth, after trauma or for reasons that remain unclear — patients can suffer sound-induced dizziness, hearing internal sounds unusually well (one-third can hear their eyes move or blink), and chronic headaches.
Patients can also suffer cognitive dysfunction — such as impaired memory, poor concentration, spatial disorientation, slurred speech, out-of-body experiences and crippling anxiety.
“If you could just blow my head off, I’d let you,” one patient said she told her husband after receiving a diagnosis of SSCD. Vertigo, nausea, confusion and other symptoms of the rare inner ear problem had made everyday tasks — from shopping to listening to music — unbearable. “I cannot live like this,” she said.
Wackym, Todd Mowery and other colleagues in the Department of Otolaryngology — Head and Neck Surgery are working to speed the recovery of patients like this one, and a Mongolian gerbil with an ear structure like humans could help eventually help researchers better understand the cognitive challenges and facilitate recovery.
Their findings are published in the neuro-otology section of the journal Frontiers in Neurology.
“We don’t know what part of the brain is impacted by this disorder,” said Wackym. “That’s where the animal model comes in. With this model we might be able to understand the nervous system pathways affected by SSCD and develop interventions to prevent this dysfunction or accelerate recovery.”
As much as two percent of the U.S. population has SSCD, which was first medically identified in 1998. “While surgery can plug the third hole, based upon neuropsychology studies in these patients, full cognitive recovery can take between three and 18 months,” Wackym said.
To develop the animal testing model, 36 adult Mongolian gerbils were randomly divided into two groups, which received either a small (one millimeter) or large (two millimeter) semicircular canal fenestration in their inner ear. This procedure created an artificial third window.
The researchers then studied how the animals responded to pressure and sound stimulation. They found that the large window resulted in similar electrophysiologic findings as observed in human patients with SSCD.
They also discovered the bony holes created in the animal’s inner ear healed spontaneously, with all hearing and balance functioning returning to baseline. “This will enable future studies to test SSCD conditions before, during and after recovery — findings that could be applied to human patients,” Wackym said.
“If we knew what was impacted and what was involved with the central neuroplasticity of SSCD, we could develop interventions that might speed up the human-recovery process,” he said. “As the first successful animal model for SSCD, this tool will help neuroscientists better understand the anatomy and pathology of SSCD cognitive dysfunction.”

A team from Nagoya University in Japan used the drug fasudil to reverse two common symptoms associated with schizophrenia: reduced density of pyramidal neurons and cognitive dysfunction associated with methamphetamine treatment.? Their findings, which were published in Pharmacological Research, suggest new therapeutic approaches for treating schizophrenia patients.
Genetic vulnerability is generally accepted to be involved in the development of schizophrenia. One of the key genetic factors involved is copy-number variation, a genetic trait in which people have different numbers of a particular gene. In particular, variations in the copy number of the ARHGAP10 gene are associated with symptoms of schizophrenia.
ARHGAP10 encodes a protein that is involved in the regulation of the Rho GTPase family of enzymes. Among these Rho GTPase family members, a few reports have implicated RhoA in schizophrenia. In the current research, the group theorized that some of the downstream factors of RhoA may be treatment targets. They identified Rho-associated kinase (ROCK), as a potential therapeutic target, since activation of the RhoA/ROCK signaling pathway stimulates many risk factors for schizophrenia.
When model mice with mutations in their ARHGAP10 gene are bred, they exhibit symptoms similar to those of human schizophrenia patients. Symptoms include altered spine density, methamphetamine-induced cognitive dysfunction, and activation of RhoA/ROCK signaling.
“ROCK signaling promotes spine shrinkage and destabilization,” said lead researcher Rinako Tanaka from Nagoya University Graduate School of Medicine. “This is important because cognitive impairment, such as that seen in schizophrenia, is known to be associated with spine morphology.”
A team led by the Nagoya University Graduate School of Medicine, in collaboration with Fujita Health University, used fasudil to inhibit ROCK in model mice with mutations in their ARHGAP10 gene to see if this improved symptoms. They found that treatment restored the density of pyramidal neurons in the medial prefrontal cortex, a part of the brain associated with attention and long-term memory. As a result, mice with methamphetamine-induced cognitive impairment treated with the drug also performed better on visual discrimination tests.
“Our findings clarify how ROCK contributes to the neuropathological changes in spine morphology and to the cognitive vulnerability to methamphetamine caused by schizophrenia-associated mutations in the ARHGAP10 gene,”?Tanaka said. “Targeting Rho-kinase signaling may provide new therapeutic approaches for the treatment of schizophrenia patients, including those with ARHGAP10 gene mutations. Inhibitors of Rho kinase, such as fasudil, or those downstream of Rho kinase may be future therapeutic drugs for schizophrenia.” ?

Imidazole dipeptides (IDPs), which are abundant in meat and fish, are substances produced in the bodies of various animals, including humans, and have been reported to be effective in relieving fatigue and preventing dementia. However, the physiological mechanism by which IDPs exhibit these activities had not been determined previously.
A research team, led by Professor Hideshi Ihara from the Osaka Metropolitan University Graduate School of Science, was the first to discover 2-oxo-imidazole-containing dipeptides (2-oxo-IDPs) — which have one more oxygen atom than normal IDPs — and found that they are the most common variety of IDPs derivatives in the body. The researchers also found that they have remarkably high antioxidant activity.
In their study, the researchers established a method for selective and highly sensitive detection of five types of 2-oxo-IDPs using mass spectrometry, which enables quantitative detection of trace 2-oxo-IDPs in living organisms. Using this method, they revealed for the first time that beef, pork, chicken, and other meats contain antioxidants, not only IDPs but a variety of different 2-oxo-IDPs. Their findings were published in Antioxidants.
“We hope that this research method, which enables advanced analysis of 2-oxo-IDPs, will be applied not only to basic biology but also to medicine, agriculture, and pharmacy, where it will help improve peoples’ health and prevent diseases,” concluded Professor Ihara.

Published3 days agoShareclose panelShare pageCopy linkAbout sharingImage source, Getty ImagesSewage leaks are causing hospitals a host of problems as the backlog in repairs and maintenance grows. Hospitals in England reported patients slipping on sewage, staff becoming ill, and leaks in A&E departments, cancer wards and maternity units.It comes after the repairs backlog grew by 11% in the past year to a total of £10.2bn.The reports have been released after a Freedom of Information request by the Liberal Democrats.A total of 55 hospital trusts provided information – nearly half the total in England. More than half had experienced problems with sewage leaks over the past year. For some, they were isolated incidents, while others reported more than 100 leaks.’A national scandal’Leeds Teaching Hospitals documented 105 incidents, including one in the respiratory day unit, and excrement coming through floor tiles, as well as overflowing toilets. The trust blamed ageing buildings as well as people flushing the wrong things down toilets.The Princess Alexandra Hospital in Harlow listed 40 leaks. In one instance a patient slipped because of a leak and, in another, staff were left struggling to work and feeling nauseous because of the smell of raw sewage. Both the resus area and A&E also reported leaks.Image source, PA MediaMichael Meredith, director of estates at the hospital’s trust, said the leaks were happening on a “regular basis” at the site, blaming the ageing buildings.”They are managed quickly and efficiently, but they are unpleasant especially where they occur in areas accessed by patients, our people or the public.”He said the trust were waiting for the go-ahead for a new hospital to be built to replace the current one.Rory Deighton, of the NHS Confederation, which represents hospitals, said there were many buildings across the NHS that were “in desperate need of repair as these shocking findings demonstrate”.”No-one working in the NHS wants this for their patients or staff,” he added.He said the issue had been worsening for the past 12 years as spending on buildings has been squeezed.The £10.2bn backlog is what needs to be spent to bring NHS buildings up to a good enough standard.Lib Dems leader Ed Davey said the situation was “unacceptable”.”Our hospitals are crumbling through a lack of investment. It’s a national scandal,” he added.The Department of Health and Social Care said it was increasing the amount of money spent on building and was in the process of developing a network of new hospitals.”We are investing record sums to upgrade and modernise NHS buildings so staff have the facilities needed to provide world-class care,” a spokesman added.

Black and Hispanic Americans appear to experience more symptoms and health problems related to long COVID, a lay term that captures an array of symptoms and health problems, than white people, but are not as likely to be diagnosed with the condition, according to new research funded by the National Institutes of Health. The findings — from two different studies by NIH’s Researching COVID to Enhance Recovery (RECOVER) Initiative — add to a growing body of research aimed to better understand the complex symptoms and other issues associated with long COVID that millions have experienced.
“This new evidence suggests that there may be important differences in how long COVID manifests in different racial and ethnic groups,” said Mitchell S.V. Elkind, M.D., a professor of neurology and epidemiology at Columbia University, New York City, and chief clinical science officer for the American Heart Association. “However, further research is needed to better understand the mechanisms for these differences in symptoms and access to care, and also if diagnostic codes assigned by clinicians may play a role.”
In one analysis, published in the Journal of General Internal Medicine, researchers looked at the health records of 62,339 adults who received a positive COVID-19 test at one of five academic health centers in New York City, all between March 2020 and October 2021. They tracked the patients’ health for one to six months after the positive test and compared the findings to 247,881 adults who never had COVID.
Among 13,106 adults who had severe COVID that required hospital care, the researchers found Black and Hispanic adults were disproportionately represented. Of those who had these severe cases, for example, 1 in 4 were Black adults, 1 in 4 were Hispanic adults, and 1 in 7 were white adults.
In the months following infection, Black adults with severe disease were more likely than white adults to be diagnosed with diabetes and experience headaches, chest pain and joint pain, but less likely to have sleep disorders, cognitive problems, or fatigue. Similarly, Hispanic adults who required hospital care were more likely than white adults to have headaches, shortness of breath, joint paint, and chest pain, but less likely to have sleep disorders, cognitive problems, or fatigue.
Similar patterns emerged among people with mild to moderate disease. Among patients who were not hospitalized, Black adults were more likely to have blood clots in their lungs, chest pain, joint pain, anemia, or be malnourished. Hispanic adults were more likely than white adults to have dementia, headaches, anemia, chest pain, and diabetes. Conversely, white adults were most likely to have conditions such as cognitive impairment (sometimes referred to as “brain fog”) and fatigue.

The researchers also found that in comparison to people who did not have COVID, those who did were more likely to experience conditions affecting their nervous system, respiratory function, and circulation, and more likely to feel fatigued or have joint pain.
“It’s not clear what’s behind these symptom variations,” said Dhruv Khullar, M.D., a study author and physician and assistant professor of health policy and economics at Weill Cornell Medicine, New York City. “We hope this work draws attention to possible differences across racial and ethnic groups, stimulates research into the potential mechanisms, and sparks discussion among patients, clinicians, and policymakers.”
In the second study, which published in BMC Medicine, researchers analyzed data from the electronic health records of 33,782 adults and children who received a diagnosis for long COVID between October 2021 and May 2022 at one of 34 U.S. medical centers. All had been given a diagnosis — Post COVID-19 condition, unspecified — the code for the condition first introduced in U.S. health care systems in October 2021.
In studying the profile of these patients and their symptoms, the researchers found multiple patterns. Among the more striking: most of the patients were white, female, non-Hispanic, and likely to live in areas with low poverty and greater access to health care.
Given what researchers already knew about the disproportionate impact of COVID on people of color and economically disadvantaged populations, the findings stood out. Emily Pfaff, Ph.D., a study author and assistant professor in the Division of Endocrinology and Metabolism at the University of North Carolina, Chapel Hill, said the pattern suggested that not all patients who have long COVID are being diagnosed.

The reasons vary. In addition to long-documented health disparities based on race and other factors, she said, women are more likely than men to seek health care in general, and patients with the time and resources to access health care tend to be disproportionally represented in clinical data.
“You can see all the different ways these diagnostic codes can provide insight, but they can also skew the whole story,” Pfaff said.
Still, she added, the insights help. She and her team found, for example, that most of the patients with long COVID had just mild to moderate, not severe, symptoms of acute infection. They also discovered that long-term symptoms could be grouped into common clusters — cardiopulmonary, neurological, gastrointestinal, and coexisting conditions — as well as by age.
Children and teens were more likely to experience gastrointestinal and upper respiratory problems, including stomach aches and coughing. Adults ages 21-45 commonly experienced neurological problems, such as brain fog and fatigue. Adults ages 66 and older were more likely to have coexisting conditions, such as heart problems and diabetes, which the authors suspect is more likely present because of age than long COVID.
The authors of both papers said additional studies are needed to confirm and further categorize these trends.
“This research contributes to our understanding of symptom clusters in long COVID that may be differentiated by race, ethnicity, and influenced by social determinants of health,” said Gary H. Gibbons, M.D., director of the National Heart, Lung, and Blood Institute. “It also provides vital insights into the utility, as well as the constraints, of the diagnostic code now in use for long COVID.”
Both studies were funded by RECOVER (HL161847-01). The National Center for Advancing Translational Sciences provided additional support for the review published in BMC Medicine through the National COVID Cohort Collaborative (N3C) Data Enclave (U24TR002306).