Ebenfalls im Juli 2022 bekannt:
"Long Covid Apheresis Community"
https://www.youtube.com/channel/UCjw4vVBGVXxgG8AgKzY0Zgw/videosDas stammt sogar aus dem Februar 2022:
https://www.thedailybeast.com/long-covid-sends-desperate-americans-abroad-for-cures?ref=scroll[*quote*]
Coronavirus
Desperate Americans Are Going Abroad for Unproven Long COVID CuresWILD WEST
Photo Illustration by Thomas Levinson/The Daily Beast/Getty
With help mostly still out of reach in the United States, some Americans are taking matters into their own hands—even as misinformation looms.
Morgan Stephens
Published Feb. 14, 2022 3:56AM ET
He used to jog. But after contracting COVID-19 in March 2020, Eli Musser said he became so weak that he lost use of his legs. The 43-year-old former copywriter and musician added that he remained bed-bound, in a wheelchair, or else left to lay in a makeshift hammock in his Queens apartment until April 2021.
Nearly two years later, Musser said, he still has trouble walking. And jogging? A memory.
“Going to the grocery store is my big event for the day,” Musser chuckled in an interview with The Daily Beast in August. “Today, I went, and that’s all I’ll do.”
Since then, he’s deteriorated, he said in January, noting he tends to remain in bed.
“Standing over the stove to make spaghetti,” he told The Daily Beast, uses up all the energy he has per day.
Two months after he got sick, Musser said, he visited an emergency room in Queens when he fell out of bed and didn’t have the strength to pull himself off the floor. This was the first wave of the pandemic. For Musser—and perhaps thousands of Americans at the time—the long-term symptoms from a novel pandemic were undocumented and unknown.
He returned to his home without any answers or treatment. It stayed that way until the summer of 2020. “There I laid like a 92-year-old terminal patient,” he said.
By that fall, he began seeing specialists at a post-COVID clinic, but continued to have difficulty breathing, convulsive episodes, severe back pain, and incessant “buzzing” throughout his body, he said.
We’re seeing around 80 percent of patients come in with brain fog. But there’s not enough labor to meet the demand.
— Dr. Helen Lavretsky
“I was non-functional,” he told The Daily Beast. “When… you find yourself getting worse, you go, ‘If this keeps up, this isn’t going to end well.’”
Musser eventually saw another doctor in New York who mentioned stem-cell treatment—a therapy that isn’t authorized by the Food and Drug Administration (FDA) to treat COVID-19 and hasn’t been clinically shown to help with what patients often call “Long COVID.”
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“I took that and ran with it,” he told The Daily Beast.
As the waitlists for post-COVID clinics get longer and the Omicron variant tears through the U.S., medical tourism among those who say their coronavirus symptoms never fully abated has taken on new urgency. But even as long-haulers go their own way, sometimes across the border, in the search for help, the treatments they’re trying haven’t been clinically tested for safety and efficacy—at least according to U.S. standards.
Meanwhile, medical misinformation shared online among long-haulers could be harmful for an already-ailing community.
A Spellbinding ‘Long Day’s Journey Into Night’ for Right Now
NO WAY OUT
Tim Teeman
In 2021, the National Institutes of Health funded about $1.2 billion to research Long COVID in the U.S. over four years. But the rigors of the scientific process can be painstakingly slow, and experts say the deficiencies in the domestic response to Long COVID are clear.
“Early on, we had a lot of funding. Then, as burnout [among health-care workers] increased, the [financial] support disappeared,” Dr. Helen Lavretsky, UCLA professor of psychiatry and behavioral sciences and the psychiatric lead of their post-COVID clinic, told The Daily Beast.
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Before the pandemic, Lavretsky specialized in cognitive impairment in older adults with Alzheimer’s disease. Today, she works with patients of all ages who exhibit cognitive dysfunction after coming down with the virus. Lavretsky said that as of January, the wait at UCLA’s general post-COVID clinic was six to eight weeks.
There was also a six-month wait for cognitive testing in her department, she said.
“We’re seeing around 80 percent of patients come in with brain fog. But there’s not enough labor to meet the demand, and when we do get funding for more labor, there’s not enough infrastructure,” she said, referring to physical space to house patients and do the work.
A study published in the Journal of the American Medical Association (JAMA) in February suggested that roughly 10 percent of those who contracted COVID-19 went on to develop some subsequent symptoms, including what might be described as Long COVID. A study published in JAMA a year earlier pegged the percentage of COVID-19 patients who had lingering symptoms closer to 30 percent. The latter was conducted before vaccines were widely available, suggesting millions of patients in the U.S. may be suffering from post-viral symptoms tied to early variants of the virus.
These numbers exclude those who never got tested in the first wave—and may also be missing those who could go on to develop Long COVID from the Omicron surge. But there’s still little targeted treatment offered to Long COVID patients, even two years into the pandemic.
Emory University pulmonologist Dr. Alex Truong started the post-COVID clinic there in the fall of 2020. According to Truong, the mood among patients tends to be equal parts gratitude for a hearing, and anxiety at the prospect of suffering indefinitely.
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People are willing to try almost anything if it might give them relief.
— Eli Musser
“Which organ systems are affected must be determined before making any treatment decisions,” Truong told The Daily Beast.
This takes testing, gathering data, approval of research publication, FDA authorization, and, finally, insurance companies deciding if they’ll cover broader protocols.
“They’re usually very net savvy and often ask about fringe interventions that haven’t been shown to help,” Truong said of Long COVID patients he’s seen. “Unfortunately, there seems to be many clinics and websites out there promising cures and relief, and for those who’ve been suffering for so long, that’s very enticing.”
Musser’s online search led him to BioXcellerator, a stem-cell research company headquartered in Phoenix that also operates in Colombia.
“The more I looked into stem-cell therapy, without understanding what was wrong with me, my homework showed me that, best case scenario, there’d be some therapeutic effect,” Musser said.
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But the science is very much still out on using stem cells to treat lingering coronavirus symptoms.
“Some people think, how could it not help individuals with COVID or Long COVID?” Dr. Leigh Turner, a professor of public health at University of California Irvine who holds an appointment at the UCI stem cell center, told The Daily Beast. “I don’t feel as optimistic. There’s a plausible biological hypothesis there, but you know, it’s the difference between acknowledging that point and actually coming up with something that's really effective in individuals in ICUs, for example, with serious lung damage or [who] have Long COVID.”
In fact, the FDA states that, due to limited data on safety and efficacy, some forms of stem-cell therapy taken without approved use can be “potentially harmful.”
Hope Biosciences CEO and Founder Donna Chang is studying stem cells on Long COVID patients in Houston through a randomized clinical trial. Eighty people will receive stem cells or a placebo to measure how effective and safe they are for long-haulers.
When asked if stem cells are more beneficial or detrimental to Long COVID patients, however, she said “it depends on the quality and what you’re getting.”
Chang added that any stem-cell therapy for Long COVID patients could backfire due to the group’s vulnerable immune systems, which, she said, could open them up to other viral infections.
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The risk goes beyond health.
“I don’t just see it as physical harm, but also financial harm, because… there’s no guarantee of getting what they’re telling you,” she told The Daily Beast.
When asked if stem-cell therapy was potentially dangerous for Long COVID patients, BioXcellerator Chief Strategy Officer Matt Marks told The Daily Beast, “We disagree. And for the most part, the scientific community worldwide concurs.”
Musser understood that the treatment in Colombia was expensive and risky, but he was desperate and wasn’t getting answers in New York. So he and his fiancé created a GoFundMe and saved up for the rest. In total, they paid about $35,000 for treatment and travel, raising $12,465 and spending their own $23,000.
“How much is it worth to get your life back?” was all that was running through his head when weighing the decision of the treatment with his fiancé, he said.
BioXcellerator’s Marks confirmed to The Daily Beast Musser was treated for Long COVID in November 2020. He claimed Musser was the first and only Long COVID patient to receive Wharton’s Jelly stem cell, a part of mesenchymal stem cell therapy derived from human umbilical cords, at the clinic. In an email obtained by The Daily Beast, a BioXcellerator employee provided a $33,182 receipt to Musser on Oct. 13, 2020, and instructions on how to prepare for treatment. Documentation shows that the treatment was performed Nov. 13, 2020.
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Marks added that the company has since stopped treating Long COVID patients, citing the need for more research and the desire to treat patients in the United States under FDA regulations.
In an email, BioxCellerator CEO Eric Stoffers wrote, “Based on existing research in the U.S. and around the world, stem cells may safely help patients with ‘Long COVID’ recover more quickly because stem cells can modulate a patient’s immune system, reduce systemic inflammation, and modulate the excess release of cytokines.”
The latter are the proteins that play a vital role in immune response, regulating inflammation and infection. Researchers have long worked to understand the COVID-19 phenomenon of a “cytokine storm,” when high levels of cytokines lead to a “dysregulated inflammatory response.” In essence, the immune system overreacts to infection, and does more harm than good.
Stoffers acknowledged “more research is needed before making any definitive conclusion.”
Musser arrived in Colombia in a wheelchair and stayed that way throughout the trip. It was both physically and emotionally taxing. “I couldn’t make it from the hotel to the medical tower—a 10-minute walk,” he said.
He received five treatments over five days in November 2020, he recalled. It didn’t bring him back to health, but he didn’t see it as wasted effort—at least at first.
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“I’m still within that window,” he said in August, citing the fact that he understood it could take up to a year for him to realize the full therapeutic benefit.
When reached again in January, Musser said his health had worsened—he did not attribute that decline to the stem-cell treatment—and sent a photo of another positive result for COVID-19.
Unproven treatments and attendant misinformation have been hallmarks of the coronavirus pandemic, highlighted by potentially dangerous right-wing favorites like hydroxychloroquine and ivermectin. The latter has been especially prominent in recent months, embraced by popular figures like podcast host Joe Rogan. This even as the American Association of Poison Control Centers reported that ivermectin-related overdose calls spiked last year when the alleged treatment gained traction on the right, with some Americans seeking out the “horse paste” version, as opposed to the one prescribed to humans. (Neither has been shown to effectively or safely treat COVID-19.)
In some cases, the same voices that have promoted experimental treatments for Long COVID that may hold legitimate promise are also flogging more suspect alternatives.
One option in the more promising camp is called HELP apheresis, a blood-filtering process similar to dialysis.
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A website for a Long COVID group started by Markus Klotz, a 43-year-old Austrian man who described himself as a one-time “volunteer” and former patient of German Dr. Beate Jaeger, has promoted HELP apheresis. Apheresis is a specialty of Jaeger, an internist and head of the Lipid Center North Rhine in Mulheim, Germany. The treatment has been previously used to treat diseases besides COVID-19 in Germany; Jaeger has personally published research on apheresis’ effects on lowering cholesterol and as a treatment for those with coronary heart disease. A study published in Therapeutic Apheresis and Dialysis suggested HELP might be effective at improving “cardiac perfusion,” or blood flow, and repairing damaged blood vessels.
I still live with symptoms including severe vertigo as if I’m rocking on a boat, daily headaches, and weekly migraines, fatigue, and muscle pain.
In January, Klotz told The Daily Beast he was no longer working with the Long COVID group, which has presented itself as a sort of patient database for long-haulers, and made some enticing claims on its website along the way.
“Millions of Long Covid sufferers can now be cured,” the site stated in August.
After The Daily Beast first asked Klotz for comment on studies or other details showing HELP apheresis might be a “cure” for Long COVID last year, the website changed one description from “cured” to “helped,” and, more recently, to “successfully treated.”
Yet as of January, it retained this statement: “The first patient was fully cured in February 2021, Dr. Jaeger went public with the announcement of a successful cure in July 2021.”
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Jaeger has denied any association with the site and denied working professionally with Klotz. She has also explicitly said her treatment is not a cure for Long COVID.
That said, Jaeger has touted HELP apheresis as a potential treatment for long-haulers, even as it remains unproven. In an interview, she said that she’s been treating Long COVID patients with it since Feb. 2021.
I was among them.
I had a mild COVID-19 infection back in November 2020, but my symptoms lingered. For four months, I lived with severe neurological symptoms that left me cognitively impaired, with constant vertigo that made me feel like I was untethered, floating in space. I was unable to communicate or problem solve. I had severe agitation and restlessness, insomnia, and depression. All of these symptoms are what my neurologist today views as mimicking a traumatic brain injury or “post-concussive syndrome.”
I still live with symptoms including severe vertigo as if I’m rocking on a boat, daily headaches, and weekly migraines, fatigue, and muscle pain.
When I went to Germany to report on Long COVID, I became a participant in research led by Dr. Jaeger and others. The study looked at the blood of long-haulers through a convalescent microscope before and after apheresis to see if they could find any biomarkers for the disease, and to see if the treatment was helpful in removing clots and other dysfunctions in the blood.
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However, after one apheresis treatment, I didn’t experience any changes to my health one way or the other.
Klotz has painted a far rosier picture. He has recently described himself as technical and managing director of a new HELP apheresis clinic being set up in Cyprus, a project—like the website—with which Jaeger has denied any affiliation.
“We work on getting insurances on board,” Klotz told The Daily Beast in February, referring to treating potential patients with HELP in Cyprus once the clinic is set up. “So, usually if a patient has private insurance, he pays the invoice and then sends it for reimbursement.”
However, the FDA hasn’t issued an Emergency Use Authorization (EUA) for this potential treatment, raising the prospect that Americans who seek it out will be forced to pay out of pocket.
Professor of Medicine at the University of Kansas and Director of the Lipid-Apheresis Center Dr. Patrick Moriarty told The Daily Beast that Jaeger’s work looks promising. But more research like randomized clinical trials are needed—like the one he’s trying to start in the U.S., he said.
“I'm a scientist. I do a lot of clinical trials and you gotta prove it to people,” Moriarty said. In his opinion, “Dr. Jaeger’s work is not the most tightly drawn-up clinical trial, but it’s of clinical value. I’m sure you’re going to need more to get people to believe it. That’s what we’re going to try to do.”
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Even if Klotz has moved on from the website advertising HELP apheresis at Dr. Jaeger’s clinic, he has a history of spreading unproven treatment information. On Jan. 8, 2022, he posted what he described as a medication regimen for long-haulers on Twitter. After a user asked if he would share his own treatment, Klotz responded by detailing specific dosages, including one for ivermectin.
Klotz also previously shared a variety of purported medical guidance on his Twitter account, including a document dubiously suggesting that “the majority of Long COVID specialists advises against too early vaccinations, or to choose a low on side effects vaccine, a traditional protein-based or inactivated vaccine.”
Hotez, a virologist and misinformation expert who has developed his own COVID vaccine with colleagues, disputed this, writing in an email to The Daily Beast that, without scientific evidence, advising against “too early vaccination” for long-haulers amounted to misinformation.
“There’s now actually a small but growing body of literature on how COVID vaccinations can sometimes prevent Long COVID,” Hotez, who is also a Daily Beast contributor, wrote in an email. “Also, some say COVID vaccinations are even therapeutic for Long COVID, [though] it’s still mostly anecdotal.”
When pressed on whether he had flogged misinformation, Klotz said that was false. He was vaccinated, he added, arguing that he was neither an anti-vaxxer nor a conspiracy theorist. “I always commented on my own experience only… I don’t take sides in any of those Twitter fights, I am only interested in helping people,” he said. In a separate email, he said, “It is my personal views and my personal experience solely. If I mentioned something, linked or discussed it, it does not mean I endorse it.”
In the United States, federal agencies such as the Federal Trade Commission (FTC) have long cracked down on companies and individuals they say have made false claims about treating COVID-19. Way back in June 2020, BioXcellerator, the company that treated Musser, was one of 160 marketers the FTC wrote with a warning to stop “unsubstantiated claims for coronavirus treatment” on its website and Facebook page.
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In a company post at the time, Stoffers responded, “If the FTC had done any investigation at all, they would have found that BioXcellerator has plenty of competent and reliable scientific evidence to support the content we published.” He added: “There are plenty of shady organizations out there making all sorts of product claims that can’t be substantiated at all. But we’re not one of those organizations.”
Musser said he wasn’t aware the clinic had received these warnings when he got his treatment.
The FDA has provided resources to inform consumers of the potential risks associated with unapproved stem cell treatment and products marketed as “regenerative medicine,” as well as some clinics “marketing or distributing their unproven products to treat complications related to COVID-19—claims that are not based on adequate clinical data.”
FDA approval for a new drug is rigorous and expensive, averaging 10 years and $2.6 billion from formulation to market, according to pre-pandemic studies from the Tufts Center for the Study of Drug Development and Duke University. These processes are necessary to ensure the safety and efficacy of a drug.
But time is something some long-haulers, like Anne McCloskey, 55, equate to no answers and prolonged illness. So she sought help from Jaeger, and said she’s been receiving HELP apheresis treatment in Germany off and on since August.
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“I was told before I left for Germany that my insurance was going to be reassessed and possibly charged more because of my frequent usage for care,” McCloskey said.
She has been “trying everything” since she developed Long COVID, she added. Since March 2020, she said, she’s seen more than 20 U.S. doctors in the pacific Northwest to address severe neurological, respiratory, and cardiac symptoms.
“I still don’t know if I'm going to make it," she said in early August, on the eve of her first 12-hour flight to Mulheim. “I’m not trending in the right direction. I give myself 10 years, give or take, and the clock is running out.” Since contracting the virus in March 2020, her labs show elevated cytokines and markers for Lupus and autoimmune-related results that suggest her body is “attacking itself,” McCloskey explained.
Reached in February, McCloskey said her symptoms had improved. “Before I left for Germany I was bedridden and just watched shows and talked on Zoom all day… I definitely had an improvement in function,” she said, noting she was still experiencing ongoing neurological problems like memory loss and constant vertigo.
A lot of that stuff was floating around online, it would get into the forums.
— Keith, long-hauler in the Southwest U.S.
Tales of relief like that one, whether through stem cells, apheresis, or other medication protocols, have filtered through support-group message boards and social media. One of them reached Keith, an attorney and long-hauler in the Southwest who was so desperate to feel normal again that he decided to abandon the U.S. medical system and seek reprieve in Mexico.
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Like Musser and McCloskey, Keith—who spoke under the condition his last name be withheld, fearing he might lose his law license—has taken treatment into his own hands. He said he spent the last year and a half crossing the border into Mexico to obtain medication for what he described as neurological, vascular, and psychiatric post-COVID symptoms.
Although what he is doing is legal, Keith said, he worries that telling the public about his trips to Mexico might damage his reputation.
“I do what I have to do. When you’re sick, you need action,” he told The Daily Beast. “I have a number of years I’m willing to stick this out. I can’t wait for the FDA.”
After contracting COVID-19 in March 2020, Keith said, he initially could only focus in 10-minute bursts, and then would have to stop working. He’s slowly improved cognitively, but isn’t back to his pre-COVID health.
For months, Keith’s Long COVID neuropsychiatric symptoms spiraled him into “all day, 24/7” suicidal ideation, he said, describing his situation as “life or death.”
That’s when he started crossing the border every three weeks to stock up on a cocktail of anti-virals, anti-parasitics, and other medications, he said. Since spring of 2021, Keith added, he has slowly improved, but is not back to his pre-COVID-19 baseline.
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“The trips to Mexico didn’t cure me,” he told The Daily Beast.
Keith said the protocol he tried was touted by the group Front Line COVID-19 Critical Care Alliance (FLCCCA), an outfit described as “fringe” by Scientific American that has plugged ivermectin, which, again, is an unproven and controversial purported treatment for COVID-19.
The operation has not exactly shied away from right-wing politics in general. Doctors from FLCCCA marched against vaccine mandates in Washington, D.C. on Jan. 23, citing them as “draconian,” according to the group’s website. The next day, FLCCCA participated in a round-table discussion on Capitol Hill against vaccine mandates led by far-right Wisconsin U.S. Sen. Ron Johnson.
“Right now I’m not aware of any group that promotes ivermectin aggressively as being considered reliable,” said Hotez.
But after visiting numerous doctors, Keith said, he decided to participate in research led by Dr. Bruce Patterson, a pathologist studying Long COVID patients. Patterson is one of four doctors listed as having collaborated on “I-RECOVER” with FLCCCA, a Long COVID treatment protocol made available online. Medications on it have included ivermectin. Long-haulers have shared that information widely on support groups and on social media.
“A lot of that stuff was floating around online, it would get into the forums,” said Keith, noting that Patterson never acted as a prescribing doctor. “I spent 10 hours a day online finding treatment from the FLCCCA protocol.”
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FLCCCA did not respond to multiple requests for comment by The Daily Beast.
In a phone conversation in January, Patterson said he was not associated with FLCCCA. He also said he was no longer suggesting ivermectin due to it not being effective. Patterson added that he and his team were starting a randomized trial for a new treatment with controls that will be announced in the spring.
When asked about Keith’s trips to Mexico, Patterson advised against such a practice, calling it “highly irregular and not based on any recommendations from IncellDx,” the diagnostics company he conducts his business through.
Neither patients nor experts know what long-term effects COVID-19 may have on the body and brain five, 10, 15 years down the road. Due to the sheer numbers of cases, the individual and public health consequences and economic fallout from mass disability is potentially vast.
Experimental therapies are a financial gamble, too. Long-haulers are often burdened with unemployment, mounting medical debt, and a lengthy application process for disability insurance. And they may not have the ability to travel, leaving the phenomenon open for those of higher socioeconomic status.
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Or, like Musser, some may consider starting a donation pool to receive the treatments—or sign up for clinical trials. After he returned from Colombia, Musser participated in a trial where he received monoclonal antibody therapy.
“It’s the Wild West,” he said. “People are willing to try almost anything if it might give them relief.”
If there’s a chance at a reprieve from years of symptoms, “first-wavers” are willing to throw darts at the wall until something sticks. As with all risks, there’s a potential payoff: relief. There’s also a potential loss: making their fragile health condition worse.
They tend to agree that the potential benefits outweigh any bad outcome.
But when asked about potential risks of American patients who participate in medical tourism, an FDA spokesperson told The Daily Beast that bad outcomes often stay under the radar. “It’s very likely that adverse events are underreported by the health care providers who treat patients with these products, and by patients who may have been harmed.”
Today, 23 months after getting COVID, the hammock Musser spent months lying in has been taken down. But in January, he warned that he couldn’t speak for long periods of time because it was too exhausting. His voice was weak and crackled with labored breathing. He told The Daily Beast that a few days after testing positive again, his Long COVID symptoms like muscle weakness, difficulty breathing, blurred vision, vertigo, and insomnia had reemerged.
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Lately, Musser said, he felt hopeless.
“I don’t know if the stem cell treatment was detrimental to my health,” he said. “I don’t think we’ll ever know.”
But that hasn’t entirely swayed him toward waiting for the U.S. regulatory process to play out. When asked if he was willing to try more experimental treatments, Musser said he wasn’t sure, but leaned toward yes, depending “on the treatment” and “if I can help push the science forward, because I owe it to myself and the Long COVID community.”
Musser added that when he returns to full health, he plans to burn the hammock he laid in during those early months. It’ll be a sort of ceremony marking the end of a hellish chapter—or so he hopes.
If you or a loved one are struggling with suicidal thoughts, please reach out to the National Suicide Prevention Lifeline at 1-800-273-TALK (8255), or contact the Crisis Text Line by texting TALK to 741741.
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