‘It’s not medical tourism, it’s desperation’: rising number of Britons resort to treatment abroad | Health

‘It’s not medical tourism, it’s desperation’: rising number of Britons resort to treatment abroad | Health

Cathy Rice had been in all-consuming pain for 18 months when she decided to fly to Lithuania. “I was going up the stairs on my hands and knees. I couldn’t get to the shop. I had no quality of life,” she says.

Rice, 68, who has four grandchildren, had been told she needed a knee replacement for an injury caused by osteoarthritis but – like millions of NHS patients – faced a gruelling wait.

At a clinic in Kaunas, Lithuania’s second largest city, the operation was arranged within weeks and cost €6,800 (£5,967) – around half the cost in the UK. The price included a pre-travel consultation, return flights, airport transfers, two nights in an en suite hospital room, pre-surgery check-ups and post operative physio.

“I thought, ‘Just look at your choices. You can stay here and be in this kind of pain for another couple of years or you can take a decision’,” Rice says.

The former health sector worker, from Glasgow, is one of a growing number of Britons going abroad for routine medical care. She had never gone private before and never had a desire to. But last week, a year after the first surgery, she returned to Lithuania to have the same procedure on her other knee. This time, she says the wait she faced on the NHS was three years.

She explains tearfully that to cover the costs of the surgeries in Lithuania, she sold her house. “People think that if you’re doing this you’ve got a wonderful pension or you’re very well off. But the driver here is that people are in pain,” she says. “This is not medical tourism; it’s medical desperation.”

In the basement gym of the same hospital in Kaunas – a gleaming white clinic overlooked by Soviet-era apartment buildings – another patient, William Grover, 79, is stepping on and off an aerobic block.

William Grover having physiotherapy at Nordclinic.
William Grover paid just over £6,000 to have a hip replacement abroad. He was quoted £15,000 by a private hospital in the UK. Photograph: Oleg Nikishin/The Observer

The grandfather of eight, from Portsmouth, is two days post-surgery following a right hip replacement that cost €7,000 (£6,146). The former construction worker decided to fly the two and a half hours from Luton to Lithuania to have the procedure at the Nordorthopaedics clinic after facing an uncertain wait on the NHS. He had been quoted £15,000 by a private hospital in the UK.

“I always used the NHS. I never thought I would need to go private. But my hip was getting worse and worse and I got to the stage where I was just thinking, ‘What am I going to do?’” he says.

Battered by the pandemic, workforce shortages and a chronic lack of social care capacity, the UK’s health systems are under acute strain. The latest NHS figures show that 7.19 million people were waiting for treatment in England alone in November, with 406,575 waiting over a year. There were more than 600,000 patients waiting in Scotland for planned procedures at the end of last September and there were more than 750,000 waiting to start treatment in Wales in October.

A Department of Health and Social Care spokesperson said it was “working tirelessly” to ensure people get the care they need and that the NHS had “virtually eliminated waits of more than two years for treatment”.

The Welsh government said it had “ambitious targets” to tackle delays for planned care while the Scottish government said it was opening four national treatment centres that could provide capacity for over “12,250 additional procedures, dependent on workforce”.

But a growing number of people are resorting to going private. Google trends data shows UK searches for “private healthcare” are at a record high while figures from the Private Healthcare Information Network show the number self-paying for private acute care has increased by more than a third compared with before the pandemic, with a 193{35112b74ca1a6bc4decb6697edde3f9edcc1b44915f2ccb9995df8df6b4364bc} rise in those paying for hip replacements.

For those who cannot afford private care in Britain, travelling abroad can be appealing. In some countries in Europe, operations can be as little as half the price of the equivalent treatment in the UK, even after factoring in extras like post-operative rehabilitation.

Nordclinic clinic in Lithuania.
Nordclinic clinic in Lithuania. The country has a good reputation for healthcare and is relatively inexpensive and easy to reach. Photograph: Oleg Nikishin/The Observer

There is no reliable source of data on outbound UK medical tourism, but the Office for National Statistics (ONS) has estimated that about 248,000 UK residents went abroad for medical treatment in 2019, compared with 120,000 in 2015.

For years, the medical tourism market has been dominated by people crossing borders for tummy tucks, dental work and other cosmetic treatments. But Keith Pollard, editor in chief of International Medical Travel Journal, says there is evidence of an increased demand for core medical care, with NHS waiting lists “driving business”.

Clinics in Lithuania, Hungary and Spain are all reporting a rise in demand for elective procedures like hip operations, he says. “There are rising numbers of people who are opting out of the NHS to self-pay and can afford private treatment in the UK. There is another group of patients who might not be able to afford that, but may pay £3,000 or £4,000 for a procedure overseas.”

Lithuania, whose total population is a third of the size of London’s, has become increasingly popular because it is easy to reach, relatively inexpensive, and has developed a good reputation among international patients.

This year 500 patients are expected to visit Nordclinic in Kaunas for orthopaedic surgeries alone, including hip and knee replacements, achilles tendon repair and foot and ankle surgery, up from 392 last year and compared with 150 before Covid. The clinic also has a branch offering general surgery, including hernia repairs and gallbladder surgery. In January so far, five Britons have had their gallbladders removed.

Before they travel, patients have a remote consultation, fill in a health questionnaire and supply relevant scans and blood test results. When they return, they are expected to have an x-ray after three months which is sent back to the clinic. If something were to go wrong, patients would be entitled to further free treatment to address the issues. Other clinics, like the nearby Gijos Klinikos, a sprawling hospital with wards like hotel rooms, make the same promise.

Orthopaedic surgeon Sarunas Tarasevicius prepares for surgery.
Orthopaedic surgeon Sarunas Tarasevicius says nearly all his international patients are English. Photograph: Oleg Nikishin/The Observer

Prof Sarunas Tarasevicius, an orthopaedic surgeon at Nord, says that when he began working there a decade ago, virtually none of the international patients he treated were from the UK. Now nearly all of them are, mostly from England. “Often they are elderly and they should be going to hospitals near their home. But still, somehow they make the decision,” he says. “Some people are borrowing money from their kids.”

Tarasevicius says that before Brexit, patients could get the costs for surgery like hip replacements abroad reimbursed if the NHS could not provide them in a “reasonable” timeframe – usually around six months. Funding for pre-planned care has now become more difficult to access, but still the patients come. “We were expecting a drop-off after Brexit, but it didn’t happen,” he says.

About 100km away in the capital, Vilnius, the Medical Diagnostic and Treatment Centre is also in demand among Britons. The four-floor hospital treats around 150,000 patients a year, about 5,000 of whom are from the UK. Most want health check-ups – diagnostic tests like MRIs and scans. Others come for orthopaedic surgery.

Deividas Praspaliauskas, the chief executive, says UK requests have remained at a similar level to before the pandemic but demand from Lithuanian patients has spiked in the same period. “People are planning visits from the UK and we don’t have enough capacity to treat them all,” he says.

The Gijos Klinikos clinic in Kaunas.
The Gijos Klinikos clinic in Kaunas. Photograph: Oleg Nikishin/The Observer

Maja Swinder, patient co-ordinator at EuroTreatMed, a medical travel agency, has observed a similar trend in Poland, with patients from the UK travelling for orthopaedic surgery. “Those patients were considered non-urgent cases under the NHS, and some of them had their surgeries postponed several times,” she says. “People were waiting in pain [and] some became wheelchair-bound.”

One private hospital, KCM clinic in Jelenia Góra in south-western Poland, says orthopaedic operations for UK patients were 20{35112b74ca1a6bc4decb6697edde3f9edcc1b44915f2ccb9995df8df6b4364bc} to 30{35112b74ca1a6bc4decb6697edde3f9edcc1b44915f2ccb9995df8df6b4364bc} higher in 2022 versus 2019.

In France, Carine Briat-Hilaire, chief executive and co-founder of France Surgery, a medical travel facilitator in Toulouse, said her company was seeing high demand from UK patients seeking cardiology care as well as orthopaedic surgery. “Before Brexit, English people came to France for healthcare purposes because they were reimbursed by the NHS. Now, they come to France because of the skyrocketing waiting lists in the UK,” she says.

Spotting a market, some clinics are ramping up their sales efforts. Acibadem, a leading healthcare group in Turkey, held an event at the Royal College of Surgeons in London last week to mark the opening of its UK office, which promotes its medical services. Online, clinics in Europe pay for ads that pop up when people google terms like “hip replacement” while brokerages sell treatment packages offering to send patients to Thailand and India for cut-price care.

The UK government advises patients to ensure any hospital or clinic they visit is properly regulated and that they have insurance that covers pre-planned medical care abroad. Patients should also consider potential language barriers and any aftercare they will need on returning to the UK, the NHS says.

Samantha Barker resorted to crowdfunding to pay for treatment.
Samantha Barker resorted to crowdfunding to pay for treatment.

Patients who travelled abroad said they considered the risks and decided they were worth taking.

“At the end of the day it’s benefiting my quality of life,” says Stuart Yeandle, 70, from Ceredigion, western Wales, who had a total hip replacement in Lithuania last week after facing a “three or four year wait” at home. He says that while he will have an appointment with an NHS nurse to remove the staples, the net benefit to the health service outweighs any perceived negatives. “It’s helping the NHS in reducing numbers and allowing people who can’t afford it to get it done sooner,” he says.

For many others who are waiting, paying for quicker access is an option that remains out of reach. The number of Britons using crowdfunding for private medical expenses has surged in the last five years. But while hundreds of campaigns are live – for treatments ranging from hip operations to ACL repair and brain aneurysm surgery – many never reach their target.

Last year, Samantha Barker, 25, launched a GoFundMe appeal to pay for surgery at a specialist hospital in Romania after learning that the wait in Malvern, Worcestershire, would be at least 65 weeks.

The gym instructor says she was in agony due to endometriosis, a condition where tissue grows on the outside of the womb or uterus which can cause severe pain and infertility. “I’d be screaming in the bathroom at 2am on the floor, in so much pain I couldn’t speak. They’d call an ambulance and say you need to go to A&E, then give me morphine and tell me to go back home,” she says. “There was just no hope.”

In the end, she did not come close to her £3,000 goal, so could not afford to go. Instead she had a less preferred, temporary treatment at a UK private clinic which gave her the option of repaying the £4,022 over 24 months.

It has improved her quality of life, but she has heard from others that for less money, the standard of care in Romania would have been “so much more than the UK”. “If I have to have surgery again I’d definitely try and have it abroad,” she says.

Prince Harry’s ‘desperation’ during Meghan Markle mental health struggle visible in resurfaced video

Prince Harry’s ‘desperation’ during Meghan Markle mental health struggle visible in resurfaced video

The emotional instant following Meghan Markle advised Prince Harry she was dealing with suicidal feelings has been captured in a resurfaced video clip, demonstrating the prince’s noticeable “desperation” while attending a charity event at the Royal Albert Corridor.

Back in March 2021, the Duchess of Sussex disclosed in her bombshell interview with Oprah Winfrey that she had contemplated suicide whilst performing as a senior member of the royal family members.

In the course of the interview, Meghan spoke about the second she instructed her husband she was acquiring suicidal thoughts, just several hours ahead of a Cirque du Soleil functionality at the Royal Albert Corridor in London in January 2019.

“One of the factors that however haunts me is this photograph that anyone experienced despatched me, we experienced to go to an official function at the Royal Albert Hall,” she recalled to Winfrey. “A pal claimed, ‘I know that you really don’t appear at photos, but oh my god, you fellas glance so great’ and despatched it to me.”

Meghan went on to say she “zoomed in and what I observed was the real truth of what that moment was. Because suitable before we had to go away for that, I experienced just experienced that discussion with Harry that morning,” referencing how she told Harry she “didn’t want to be alive anymore” shortly before attending the occasion.

Two months right after the sit-down job interview, Prince Harry opened up about the night time Meghan 1st told him she had considered about ending her daily life, although she was 6 months expecting with Archie at the time. Talking with Oprah Winfrey in his Apple Television set+ docuseries, The Me You Simply cannot See, Prince Harry recalled a photograph of the few squeezing each individual other’s hands as they walked into the historic London setting up.

“What most likely people today really don’t recognize is, before that night Meghan made the decision to share with me the suicidal feelings and the practicalities of how she was going to finish her existence,” he explained.

He ongoing: “The scariest issue for her was her clarity of thought. She hadn’t dropped it, she wasn’t insane, she was not self-medicating – be it via drugs or through alcoholic beverages. She was totally sober. She was totally sane, nevertheless in the tranquil of night time, these views woke her up.”

“The matter that stopped her from looking at it by way of was how unfair it would be on me soon after all the things that had transpired to my mum and to now be set into a situation of shedding yet another lady in my daily life, with a baby inside of her, our infant,” he extra, right before admitting that he felt “somewhat ashamed” with the way he reacted to his wife’s suicidal thoughts.

“Because of the method that we had been in and the tasks and the obligations that we experienced, we experienced a brief cuddle. And then we had to get altered and soar in a convoy with a law enforcement escort and drive to the Royal Albert Hall for a charity celebration and then step out into a wall of cameras and pretend as nevertheless every little thing is ok,” he described.

Now, a movie taken for the duration of the effectiveness at Royal Albert Hall has persons pointing out the “desperation” in Prince Harry’s face, knowing what had transpired just hrs ahead of.

The Duke and Duchess of Sussex hold arms outside the house the Royal Albert Corridor in London

(Getty Photographs)

The resurfaced video demonstrates the Duke and Duchess of Sussex sitting down in a box at the performance hall. The two are clapping, whilst Meghan smiles at the crowd. In the meantime, Harry’s expression is noticeably somber and straight-confronted. He grabs Meghan’s hand and appears to be like up at the ceiling when allowing out a sigh.

“The minute closely expecting Meghan tells Harry she no lengthier wants to be alive,” they wrote in the online video. “Harry looks up in the air in desperation for a way out for the reason that he is terrified of background repeating alone.”

The clip, which was shared by TikTok user @yeternal5, has a lot more than 1.5m views given that it was posted on 16 November. Many folks in the feedback part criticised Meghan for smiling in the online video, but enthusiasts rapidly came to her defense and pointed out that the duchess was putting on a courageous encounter.

Meghan Markle told Prince Harry she was enduring suicidal views hrs just before attending the charity occasion

(Getty Illustrations or photos)

“She’s not smirking, she’s masking,” 1 person commented. “She’s keeping it together and exhibiting them what they want to see. His great spouse.”

“It’s known as putting on a brave deal with,” a different man or woman wrote. “She’s there carrying out a obligation.”

“Of course she’s smiling with the way they’re on news headlines,” explained a person else. “She didn’t want there to be any pondering there’s anything likely on.”

In a recent episode of her podcast, Archetypes, Meghan Markle discovered she has been “conditioned” to not show emotion in public.

“Even my personal version of like… I would really like to cry this significantly, but I am conditioned to even now have some – a distinct type of composure,” she advised podcast guest Contance Wu. “And now you form of go, ohhh, just unwind and enable it out. And I see the similar issue in my children as you are talking about in yours, and I’m like, ‘Oh my God, I want to do that’ [release her emotions without fear or shame]. I want to truly feel so deeply. It’s like an Adele album. Just like sooo a great deal intensive emotion.”

If you are experiencing emotions of distress and isolation, or are struggling to cope, the Samaritans gives assist you can discuss to another person for totally free in excess of the telephone, in self confidence, on 116 123 (Uk and ROI), electronic mail jo@samaritans.org, or go to the Samaritans web-site to come across specifics of your closest branch.

If you are primarily based in the United states, and you or someone you know needs psychological wellbeing aid ideal now, phone Nationwide Suicide Avoidance Helpline on 1-800-273-Communicate (8255). The Helpline is a cost-free, private disaster hotline that is offered to anyone 24 hours a working day, 7 times a week.

If you are in another state, you can go to www.befrienders.org to discover a helpline in the vicinity of you.

Covid long-haulers turn to unproven treatments in desperation

Covid long-haulers turn to unproven treatments in desperation

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For the burgeoning population of covid long-haulers, there is an abundance of new treatment options: Specially formulated nutraceuticals imported from India that promise to “get you life back from covid.” Pure oxygen delivered in a pressurized chamber. And, if time and money are no obstacle, a process known as “blood washing” that’s available in Cyprus, or $25,000 stem cell treatments in the Cayman Islands.

Months-long waits at long-covid clinics combined with the sluggish pace of research have left vulnerable patients clamoring for immediate care as manufacturers bring novel remedies to market, often with little data behind them.

“I have tried, I would say, as many different things as anyone could do in my situation,” said Donna Davis-Doneghy, a 62-year-old accountant with Hearthside Food Solutions in London, Ky., who has been tormented by headaches since coming down with covid in November 2020.

“People will say to me, ‘Here’s a phone number,’ and off I go chasing something different,” said Davis-Doneghy, whose treatment regimen has ranged from acupuncture and Botox to nerve-block injections and vitamin infusions.

Long covid has taken to new heights a medical conflict that shows up with cancer and other dire diagnoses: the tension between the desire for evidence and the pressing needs of patients who are suffering. In their rush for relief, patients are turning to unproven treatments, putting them at risk of potentially harmful health effects as well as having their hopes dashed and their wallets emptied. Doctors often follow the practice of prescribing drugs off-label, not for the purpose the Food and Drug Administration originally approved them for.

What you need to know about the latest on long covid

“You want to protect people from charlatans,” said Harlan Krumholz, a professor of medicine at the Yale School of Medicine. “We need to resist the temptation to adopt tests and treatments without sufficient evidence to justify their use.”

But until researchers discover the mechanism — or, more likely, mechanisms — that cause long covid, clinicians are having to rely on their experience treating other illnesses.

“We’re kind of stuck,” said Michelle Haddad, a neuropsychologist who runs a long-covid clinic at Emory Rehabilitation Hospital in Atlanta. “I can define areas where you have impairments and how impaired you are. I can tell you what works in other, similar conditions. But I don’t have a magic pill.”

The scale of the problem — and opportunities for profiteering — are increasing as the number of Americans reporting long-lasting symptoms ramps up to as many as 15 million adults. Data released this summer by the Centers for Disease Control and Prevention suggests that almost 15 percent of the population has had long covid, or symptoms that lasted three months or longer after the acute infection.

Many long-haulers describe being devastated by disabilities that range from fatigue to brain fog and body-wracking tremors. Facing disbelief from their families and physicians, and frustrated by the slow pace of science, they are turning to social media to share ideas for relief.

While some patients report getting insurance coverage for the treatment of some symptoms, such as migraines, many end up spending thousands of dollars, out of pocket. Robert Harris, a 48-year-old veteran in Texas, estimates he has paid $25,000 for treatments, from over-the-counter supplements to the horse dewormer ivermectin and hyperbaric oxygen. “I can’t figure out what research is being done, what treatments have been approved,” he said.

The $1.15 billion Recover program, awarded nearly two years ago to the National Institutes of Health, is aimed at understanding the biological basis of long covid. Establishing the safety and efficacy of potential treatments involves a further step — setting up randomized controlled trials. Although NIH recently announced its intent to investigate the potential impact of the antiviral Paxlovid, results are not expected until 2024, reinforcing some scientists’ argument for a more agile research model to match the urgency of the moment.

“Government-sponsored and government-funded mechanisms are designed for incremental innovation — for steady and safe discoveries,” said David Putrino, director of rehabilitation innovation for Mount Sinai Health System in New York.

Under the swiftly changing circumstances of the pandemic, smaller research teams, advocacy groups and private companies with a variety of standards have stepped in — often without robust scientific evidence that the products actually work.

“We are the ETSY of long covid — DIY but giving you something the establishment can’t,” tweeted Ram Yogendra, an anesthesiologist with the California company IncellDx, referring to the company’s do-it-yourself approach, modeled on the online craftsmanship marketplace. IncellDx purports to have developed a diagnostic blood test for long covid.

Using machine learning to identify what is unusual in long-haulers’ blood, IncellDx claims to have found an immune signature or “cytokine profile” for the condition. The company, which has received a patent for using the HIV drug maraviroc to treat coronaviruses, has published three studies, enrolling more than 700 patients.

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Krumholz said immune signatures are likely to become important for diagnosis and treatment. But after reviewing the data on the IncellDx website, he warned about the dangers of researchers rushing to adopt tests before the evidence is sufficient. “The evidentiary standards need to be much higher and the transparency about the science much greater than we have today to justify widespread use,” he said.

The $415 diagnostic test has been used by about 10,000 people, creating a “tremendous database,” according to Bruce Patterson, the former Stanford virologist who leads the company. The results, Patterson said, can be used to inform personalized treatment protocols typically administered by the patients’ primary care providers. A company spokeswoman said many long-haulers pay an additional $250 for a follow-up consultation and buy additional tests to check how the therapy is working. She said the company recognizes that the data need to “evolve” and said that IncellDX is helping people in the meantime.

Patterson, who said he is working on contracts for clinical trials of a “drug combination that we think works,” said it is up to patients and their doctors to decide how to proceed with treatment. “We do what clinical pathologists should do: ‘Here is a test report, you treat accordingly,’” he said. Company doctors are available to offer guidance, Patterson said.

But Alba Azola, a physical medicine and rehabilitation specialist at Johns Hopkins Medicine, said she has treated patients who report having spent hundreds of dollars for the tests and then don’t know what to make of the results.

“They bring it to me, like, ‘Look at this,’” Azola said. “And I’m, ‘I don’t know what to do with that.’”

Other long-haulers, including Harris, have paid for treatments promoted by groups linked to vaccine hesitancy and anti-science messaging.

Among them is the Front Line Covid-19 Critical Care Alliance, a nonprofit that promotes the anti-parasitic ivermectin not only for the prevention and treatment of acute covid but also as part of its long-covid protocol. The alliance publishes a list of pharmacies that will supply ivermectin, approved by the FDA to treat some parasitic worms, head lice and skin conditions like rosacea in humans. But the drug has not been shown to be effective in the treatment of acute covid illness. The American Medical Association and other professional groups oppose using the drug for covid outside of clinical trials because of its potential toxicity.

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The alliance was co-founded by Pierre Kory, a critical-care physician who touted ivermectin as a “miracle drug” in Senate testimony and also runs a private telemedicine practice where he treats long-haulers. Kory, who charges $1,650 for an initial video consultation, follow-ups and check-in calls according to patients’ needs, said the drugs he prescribes, including ivermectin, steroids and anti-inflammatories, are safe.

In an interview, Kory said he does not follow the AMA’s position on ivermectin because the association provides general guidance but does not treat people. Other researchers say that the risks of the drug are known and that its benefits have not been shown.

“Based on the lack of effectiveness in acute covid, combined with what we know about long covid, it is extremely unlikely that ivermectin would be beneficial for someone suffering from long covid,” said Francesca Beaudoin, head of the Brown University School of Public Health’s Long Covid Initiative.

Kory also criticized the research community for being too slow to keep up with patient needs.

“We’re stuck right now trying to help patients with trial and error until the science evolves,” he said. “All of my patients get better to some extent.”

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Among the most common online offerings are dietary supplements, which do not have to meet the same regulatory standards as pharmaceuticals. While drugs must be shown to be safe and effective before they reach the consumer, there are no such provisions for the FDA to regulate vitamins, herbs and amino acids.

One of the most widely touted supplements among long-haulers is Vedicinals-9, a new herbal suspension that purports to support “the human organism in the recovery phase from viral infections.”

The nutraceutical is made in India, where it is regulated as a food for special medical purpose, or FSMP, and then shipped around the world. A 42-day supply costs $95, according to the product website.

Harris said he bought several boxes but that the solution didn’t reduce the muscle spasms and pain he has suffered since testing positive 10 months ago. Other patients have reported benefits.

The company’s founder, retired German businessman Joachim Gerlach, said he had long been interested in finding natural remedies for chronic illness, which he has witnessed among family members. He turned his attention to acute covid in early 2020, Gerlach said, hoping, as long covid emerged, to find a common approach that would help large numbers of people. He believes that many symptoms stem from an imbalance of the gut bacteria that can help combat disease.

Gerlach, who has reached out to prominent long-covid researchers around the world to plan research next year, said his progress on long covid was “lacking a little bit on the side of publishing.” But by financing Vedicinals out of his own pocket, he said, he can “act fully in the patient’s interest” without pressure from shareholders.

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New tests and products keep cropping up.

Earlier this month, QMC Health, a diagnostic testing technology company, announced its intention to produce a long-covid rapid test, based on blood biomarkers.

MDHyperbaric, a company in New York, offers oxygen therapy for a variety of conditions, from healing bones to slowing aging and improving long-covid symptoms, saying it plans to measure long-hauler outcomes.

And in October, Norman B. Gaylis, a Miami-based rheumatologist, collaborated with Tel Aviv researchers to release an “all-natural, patented formula RESTORE,” described on the company’s website as “proven by clinical study” to improve symptoms of covid long-haulers.

That study, published in Frontiers in Nutrition, involved 51 patients with positive coronavirus tests who reported lingering symptoms three to 11 months after infection. On average, the participants reported that their symptoms were milder after two weeks and better still after four, according to the study.

The study is small and lacked a control group to assess whether the patients’ symptoms would have improved anyway over time or whether their self-reported improvements resulted from a placebo effect.

“Obviously, a double-blind control is more valuable,” Gaylis said in a telephone interview. “Between time and cost and urgency, these things take so long, we felt it was sufficient.” The biggest endorsement of the product, he said, was that so many people who took part in the study asked to buy it.

Without solid data about treatments, some primary care physicians have fallen into a “kitchen-sink approach,” according to Haddad, the rehabilitation specialist at Emory.

Haddad saw one patient who had been prescribed Benadryl and several other sedating drugs in addition to an antidepressant that she was already taking. When the patient complained of brain fog, her doctor added Adderal, a stimulant — a little like chasing shots of hard liquor with double espressos.

“They kept throwing things at the post-covid,” Haddad said. “They didn’t step back and ask, ‘Could medications be part of the culprit?’”

Meanwhile, clinicians who are running long-covid clinics at major medical centers are drawing on their experience treating conditions with similar symptoms, such as ME/CFS, or chronic fatigue syndrome; POTS, a blood circulation disorder that causes a rapid heartbeat; and what’s known as post-ICU syndrome.

“We’re using a lot of experience, anecdotal evidence and related evidence with other conditions,” said Benjamin Abramoff, director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine. “A lot of the things we do have not gone through trials.”

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Many rehab experts have been meeting at CDC-funded monthly webinars to pool the expertise they are gaining and come up with guidance published by the American Academy of Rehabilitation and Physical Medicine.

There are likely to be therapeutic benefits to some of the treatments long-haulers are trying. A few small studies have suggested hyperbaric oxygen may provide relief. The spice turmeric, or curcumin — an ingredient found in Vedicinals and the Front Line Covid-19 Critical Care Alliance’s protocols — has anti-inflammatory properties. The key, clinicians say, is to evaluate the risk/benefit ratio for every therapy, including potentially detrimental interactions with other medications.

“For things patients are interested in trying, I won’t dissuade them if the risk of harm is low,” said Jeffrey Fine, director of rehabilitation medicine at NYU Langone Hospital, who said he tries “to meet patients where they are.”

In the meantime, patients continue their own research, through online resources such as Twitter.

“It’s my social life, my family, my research library,” said Molly Gordon, a 69-year-old executive coach in Washington state who gradually pieced together a self-diagnosis of mast cell activation syndrome — a condition akin to allergic reactions — that she believes came from long covid. Gordon said she is putting about $500 a month of her retirement savings toward supplements and cannabis.

Those networks have turned long-covid care into an international free-for-all, as patients search for therapies overseas, often with little idea of the regulatory oversight — or lack thereof.

Laura Wright, 45, a reflexologist in England, joined Twitter to glean information from fellow sufferers around the world about how to combat the fatigue that has plagued her since she came down with covid a year ago. She tried hyperbaric oxygen and began taking “every supplement under the sun and adding new ones every month,” Wright said, including garlic, hawthorn, B-12 and magnesium, until she began wondering whether they were doing her more harm than good.

She went cold turkey. With one exception: Boluoke.

Wright has pinned her hopes on the earthworm extract that is thought to promote circulatory health. A bottle of 30 capsules, which she imports from Canada, costs about $55.

“If I can get back to working again, then it will be worth it,” Wright said.