Picture Illustration by Thomas Levinson/The Each day Beast/Getty
He used to jog. However after contracting COVID-19 in March 2020, Eli Musser stated he grew to become so weak that he misplaced 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 put in a makeshift hammock in his Queens condominium till April 2021.
Almost two years later, Musser stated, he nonetheless has bother strolling. And jogging? A reminiscence.
“Going to the grocery retailer is my large occasion for the day,” Musser chuckled in an interview with The Each day Beast in August. “As we speak, I went, and that’s all I’ll do.”
Since then, he’s deteriorated, he stated in January, noting he tends to stay in mattress.
“Standing over the range to make spaghetti,” he advised The Each day Beast, makes use of up all of the vitality he has per day.
Two months after he bought sick, Musser stated, he visited an emergency room in Queens when he fell away from bed and didn’t have the power to tug himself off the ground. This was the first wave of the pandemic. For Musser—and maybe hundreds of People on the time—the long-term signs from a novel pandemic had been undocumented and unknown.
He returned to his residence with none solutions or remedy. It stayed that manner till the summer season of 2020. “There I laid like a 92-year-old terminal affected person,” he stated.
By that fall, he started seeing specialists at a post-COVID clinic, however continued to have problem respiratory, convulsive episodes, extreme again ache, and relentless “buzzing” all through his physique, he stated.
“I used to be non-functional,” he advised The Each day Beast. “When… you end up getting worse, you go, ‘If this retains up, this isn’t going to finish effectively.’”
Musser ultimately noticed one other physician in New York who talked about stem-cell remedy—a remedy that isn’t licensed by the Meals and Drug Administration (FDA) to deal with COVID-19 and hasn’t been clinically proven to assist with what sufferers usually name “Lengthy COVID.”
“I took that and ran with it,” he advised The Each day Beast.
Because the waitlists for post-COVID clinics get longer and the Omicron variant tears via the U.S., medical tourism amongst those that say their coronavirus signs by no means totally abated has taken on new urgency. However whilst long-haulers go their very own manner, generally throughout the border, within the seek for assist, the therapies they’re attempting haven’t been clinically examined for security and efficacy—at the least in accordance with U.S. requirements.
In the meantime, medical misinformation shared on-line amongst long-haulers could possibly be dangerous for an already-ailing group.
In 2021, the Nationwide Institutes of Well being funded about $1.2 billion to analysis Lengthy COVID within the U.S. over 4 years. However the rigors of the scientific course of could be painstakingly sluggish, and consultants say the deficiencies within the home response to Lengthy COVID are clear.
“Early on, we had a number of funding. Then, as burnout [among health-care workers] elevated, the [financial] assist disappeared,” Dr. Helen Lavretsky, UCLA professor of psychiatry and behavioral sciences and the psychiatric lead of their post-COVID clinic, advised The Each day Beast.
Earlier than the pandemic, Lavretsky specialised in cognitive impairment in older adults with Alzheimer’s illness. As we speak, she works with sufferers of all ages who exhibit cognitive dysfunction after coming down with the virus. Lavretsky stated that as of January, the wait at UCLA’s normal post-COVID clinic was six to eight weeks.
There was additionally a six-month watch for cognitive testing in her division, she stated.
“We’re seeing round 80 p.c of sufferers are available in with mind fog. However there’s not sufficient labor to satisfy the demand, and after we do get funding for extra labor, there’s not sufficient infrastructure,” she stated, referring to bodily house to accommodate sufferers and do the work.
A research printed within the Journal of the American Medical Affiliation (JAMA) in February prompt that roughly 10 p.c of those that contracted COVID-19 went on to develop some subsequent signs, together with what is likely to be described as Lengthy COVID. A research printed in JAMA a yr earlier pegged the share of COVID-19 sufferers who had lingering signs nearer to 30 p.c. The latter was carried out earlier than vaccines had been extensively obtainable, suggesting hundreds of thousands of sufferers within the U.S. could also be affected by post-viral signs tied to early variants of the virus.
These numbers exclude those that by no means bought examined within the first wave—and may additionally be lacking those that may go on to develop Lengthy COVID from the Omicron surge. However there’s nonetheless little focused remedy provided to Lengthy COVID sufferers, even two years into the pandemic.
Emory College pulmonologist Dr. Alex Truong began the post-COVID clinic there within the fall of 2020. In line with Truong, the temper amongst sufferers tends to be equal components gratitude for a listening to, and anxiousness on the prospect of struggling indefinitely.
“Which organ programs are affected should be decided earlier than making any remedy selections,” Truong advised The Each day Beast.
This takes testing, gathering knowledge, approval of analysis publication, FDA authorization, and, lastly, insurance coverage corporations deciding in the event that they’ll cowl broader protocols.
“They’re often very internet savvy and infrequently ask about fringe interventions that haven’t been proven to assist,” Truong stated of Lengthy COVID sufferers he’s seen. “Sadly, there appears to be many clinics and web sites on the market promising cures and aid, and for many who’ve been struggling for thus lengthy, that’s very engaging.”
Musser’s on-line search led him to BioXcellerator, a stem-cell analysis firm headquartered in Phoenix that additionally operates in Colombia.
“The extra I appeared into stem-cell remedy, with out understanding what was flawed with me, my homework confirmed me that, finest case state of affairs, there’d be some therapeutic impact,” Musser stated.
However the science could be very a lot nonetheless out on utilizing stem cells to deal with lingering coronavirus signs.
“Some individuals assume, how may it not assist people with COVID or Lengthy COVID?” Dr. Leigh Turner, a professor of public well being at College of California Irvine who holds an appointment on the UCI stem cell heart, advised The Each day Beast. “I don’t really feel as optimistic. There’s a believable organic speculation there, however , it’s the distinction between acknowledging that time and truly arising with one thing that is actually efficient in people in ICUs, for instance, with severe lung injury or [who] have Lengthy COVID.”
Actually, the FDA states that, resulting from restricted knowledge on security and efficacy, some types of stem-cell remedy taken with out accredited use could be “probably dangerous.”
Hope Biosciences CEO and Founder Donna Chang is learning stem cells on Lengthy COVID sufferers in Houston via a randomized medical trial. Eighty individuals will obtain stem cells or a placebo to measure how efficient and protected they're for long-haulers.
When requested if stem cells are extra useful or detrimental to Lengthy COVID sufferers, nonetheless, she stated “it is dependent upon the standard and what you’re getting.”
Chang added that any stem-cell remedy for Lengthy COVID sufferers may backfire because of the group’s susceptible immune programs, which, she stated, may open them as much as different viral infections.
The danger goes past well being.
“I don’t simply see it as bodily hurt, but in addition monetary hurt, as a result of… there’s no assure of getting what they’re telling you,” she advised The Each day Beast.
When requested if stem-cell remedy was probably harmful for Lengthy COVID sufferers, BioXcellerator Chief Technique Officer Matt Marks advised The Each day Beast, “We disagree. And for probably the most half, the scientific group worldwide concurs.”
Musser understood that the remedy in Colombia was costly and dangerous, however he was determined and wasn’t getting solutions in New York. So he and his fiancé created a GoFundMe and saved up for the remainder. In whole, they paid about $35,000 for remedy and journey, elevating $12,465 and spending their very own $23,000.
“How a lot is it price to get your life again?” was all that was working via his head when weighing the choice of the remedy along with his fiancé, he stated.
BioXcellerator’s Marks confirmed to The Each day Beast Musser was handled for Lengthy COVID in November 2020. He claimed Musser was the primary and solely Lengthy COVID affected person to obtain Wharton’s Jelly stem cell, part of mesenchymal stem cell remedy derived from human umbilical cords, on the clinic. In an e mail obtained by The Each day Beast, a BioXcellerator worker supplied a $33,182 receipt to Musser on Oct. 13, 2020, and directions on how you can put together for remedy. Documentation reveals that the remedy was carried out Nov. 13, 2020.
Marks added that the corporate has since stopped treating Lengthy COVID sufferers, citing the necessity for extra analysis and the need to deal with sufferers in america below FDA laws.
In an e mail, BioxCellerator CEO Eric Stoffers wrote, “Primarily based on current analysis within the U.S. and world wide, stem cells might safely assist sufferers with ‘Lengthy COVID’ recuperate extra rapidly as a result of stem cells can modulate a affected person’s immune system, cut back systemic irritation, and modulate the surplus launch of cytokines.”
The latter are the proteins that play a significant function in immune response, regulating irritation and an infection. Researchers have lengthy labored to know the COVID-19 phenomenon of a “cytokine storm,” when excessive ranges of cytokines result in a “dysregulated inflammatory response.” In essence, the immune system overreacts to an infection, and does extra hurt than good.
Stoffers acknowledged “extra analysis is required earlier than making any definitive conclusion.”
Musser arrived in Colombia in a wheelchair and stayed that manner all through the journey. It was each bodily and emotionally taxing. “I couldn’t make it from the resort to the medical tower—a 10-minute stroll,” he stated.
He acquired 5 therapies over 5 days in November 2020, he recalled. It didn’t deliver him again to well being, however he didn’t see it as wasted effort—at the least at first.
“I’m nonetheless inside that window,” he stated in August, citing the truth that he understood it may take as much as a yr for him to understand the complete therapeutic profit.
When reached once more in January, Musser stated his well being had worsened—he didn't attribute that decline to the stem-cell remedy—and despatched a photograph of one other optimistic outcome for COVID-19.
Unproven therapies and attendant misinformation have been hallmarks of the coronavirus pandemic, highlighted by probably harmful right-wing favorites like hydroxychloroquine and ivermectin. The latter has been particularly outstanding in current months, embraced by in style figures like podcast host Joe Rogan. This even because the American Affiliation of Poison Management Facilities reported that ivermectin-related overdose calls spiked final yr when the alleged remedy gained traction on the correct, with some People searching for out the “horse paste” model, versus the one prescribed to people. (Neither has been proven to successfully or safely deal with COVID-19.)
In some circumstances, the identical voices which have promoted experimental therapies for Lengthy COVID that will maintain legit promise are additionally flogging extra suspect alternate options.
One choice within the extra promising camp is known as HELP apheresis, a blood-filtering course of much like dialysis.
An internet site for a Lengthy COVID group began by Markus Klotz, a 43-year-old Austrian man who described himself as a one-time “volunteer” and former affected person of German Dr. Beate Jaeger, has promoted HELP apheresis. Apheresis is a specialty of Jaeger, an internist and head of the Lipid Heart North Rhine in Mulheim, Germany. The remedy has been beforehand used to deal with illnesses moreover COVID-19 in Germany; Jaeger has personally printed analysis on apheresis’ results on decreasing ldl cholesterol and as a remedy for these with coronary coronary heart illness. A research printed in Therapeutic Apheresis and Dialysis prompt HELP is likely to be efficient at bettering “cardiac perfusion,” or blood stream, and repairing broken blood vessels.
In January, Klotz advised The Each day Beast he was now not working with the Lengthy COVID group, which has introduced itself as a form of affected person database for long-haulers, and made some engaging claims on its web site alongside the best way.
“Hundreds of thousands of Lengthy Covid victims can now be cured,” the location acknowledged in August.
After The Each day Beast first requested Klotz for touch upon research or different particulars displaying HELP apheresis is likely to be a “treatment” for Lengthy COVID final yr, the web site modified one description from “cured” to “helped,” and, extra lately, to “efficiently handled.”
But as of January, it retained this assertion: “The primary affected person was totally cured in February 2021, Dr. Jaeger went public with the announcement of a profitable treatment in July 2021.”
Jaeger has denied any affiliation with the location and denied working professionally with Klotz. She has additionally explicitly stated her remedy isn't a treatment for Lengthy COVID.
That stated, Jaeger has touted HELP apheresis as a possible remedy for long-haulers, even because it stays unproven. In an interview, she stated that she’s been treating Lengthy COVID sufferers with it since Feb. 2021.
I used to be amongst them.
I had a gentle COVID-19 an infection again in November 2020, however my signs lingered. For 4 months, I lived with extreme neurological signs that left me cognitively impaired, with fixed vertigo that made me really feel like I used to be untethered, floating in house. I used to be unable to speak or downside clear up. I had extreme agitation and restlessness, insomnia, and melancholy. All of those signs are what my neurologist right now views as mimicking a traumatic mind harm or “post-concussive syndrome.”
I nonetheless stay with signs together with extreme vertigo as if I’m rocking on a ship, every day complications, and weekly migraines, fatigue, and muscle ache.
After I went to Germany to report on Lengthy COVID, I grew to become a participant in analysis led by Dr. Jaeger and others. The research appeared on the blood of long-haulers via a convalescent microscope earlier than and after apheresis to see if they might discover any biomarkers for the illness, and to see if the remedy was useful in eradicating clots and different dysfunctions within the blood.
Nonetheless, after one apheresis remedy, I didn’t expertise any modifications to my well being by some means.
Klotz has painted a far rosier image. He has lately described himself as technical and managing director of a brand new HELP apheresis clinic being arrange in Cyprus, a undertaking—like the web site—with which Jaeger has denied any affiliation.
“We work on getting insurances on board,” Klotz advised The Each day Beast in February, referring to treating potential sufferers with HELP in Cyprus as soon as the clinic is ready up. “So, often if a affected person has personal insurance coverage, he pays the bill after which sends it for reimbursement.”
Nonetheless, the FDA hasn’t issued an Emergency Use Authorization (EUA) for this potential remedy, elevating the prospect that People who search it out will probably be compelled to pay out of pocket.
Professor of Medication on the College of Kansas and Director of the Lipid-Apheresis Heart Dr. Patrick Moriarty advised The Each day Beast that Jaeger’s work appears promising. However extra analysis like randomized medical trials are wanted—just like the one he’s attempting to begin within the U.S., he stated.
“I am a scientist. I do a number of medical trials and also you gotta show it to individuals,” Moriarty stated. In his opinion, “Dr. Jaeger’s work isn't probably the most tightly drawn-up medical trial, however it’s of medical worth. I’m certain you’re going to want extra to get individuals to imagine it. That’s what we’re going to attempt to do.”
Even when Klotz has moved on from the web site promoting HELP apheresis at Dr. Jaeger’s clinic, he has a historical past of spreading unproven remedy data. On Jan. 8, 2022, he posted what he described as a drugs routine for long-haulers on Twitter. After a consumer requested if he would share his personal remedy, Klotz responded by detailing particular dosages, together with one for ivermectin.
Klotz additionally beforehand shared a wide range of purported medical steering on his Twitter account, together with a doc dubiously suggesting that “nearly all of Lengthy COVID specialists advises towards too early vaccinations, or to decide on a low on unintended effects vaccine, a standard protein-based or inactivated vaccine.”
Hotez, a virologist and misinformation professional who has developed his personal COVID vaccine with colleagues, disputed this, writing in an e mail to The Each day Beast that, with out scientific proof, advising towards “too early vaccination” for long-haulers amounted to misinformation.
“There’s now really a small however rising physique of literature on how COVID vaccinations can generally forestall Lengthy COVID,” Hotez, who can also be a Each day Beast contributor, wrote in an e mail. “Additionally, some say COVID vaccinations are even therapeutic for Lengthy COVID, [though] it’s nonetheless principally anecdotal.”
When pressed on whether or not he had flogged misinformation, Klotz stated that was false. He was vaccinated, he added, arguing that he was neither an anti-vaxxer nor a conspiracy theorist. “I all the time commented alone expertise solely… I don’t take sides in any of these Twitter fights, I'm solely occupied with serving to individuals,” he stated. In a separate e mail, he stated, “It's my private views and my private expertise solely. If I discussed one thing, linked or mentioned it, it doesn't imply I endorse it.”
In america, federal businesses such because the Federal Commerce Fee (FTC) have lengthy cracked down on corporations and people they are saying have made false claims about treating COVID-19. Manner again in June 2020, BioXcellerator, the corporate that handled Musser, was considered one of 160 entrepreneurs the FTC wrote with a warning to cease “unsubstantiated claims for coronavirus remedy” on its web site and Fb web page.
In an organization publish on the time, Stoffers responded, “If the FTC had finished any investigation in any respect, they'd have discovered that BioXcellerator has loads of competent and dependable scientific proof to assist the content material we printed.” He added: “There are many shady organizations on the market making all types of product claims that may’t be substantiated in any respect. However we’re not a kind of organizations.”
Musser stated he wasn’t conscious the clinic had acquired these warnings when he bought his remedy.
The FDA has supplied sources to tell customers of the potential dangers related to unapproved stem cell remedy and merchandise marketed as “regenerative drugs,” in addition to some clinics “advertising or distributing their unproven merchandise to deal with issues associated to COVID-19—claims that aren't primarily based on sufficient medical knowledge.”
FDA approval for a brand new drug is rigorous and costly, averaging 10 years and $2.6 billion from formulation to market, in accordance with pre-pandemic research from the Tufts Heart for the Examine of Drug Improvement and Duke College. These processes are obligatory to make sure the security and efficacy of a drug.
However time is one thing some long-haulers, like Anne McCloskey, 55, equate to no solutions and extended sickness. So she sought assist from Jaeger, and stated she’s been receiving HELP apheresis remedy in Germany on and off since August.
“I used to be advised earlier than I left for Germany that my insurance coverage was going to be reassessed and probably charged extra due to my frequent utilization for care,” McCloskey stated.
She has been “attempting all the things” since she developed Lengthy COVID, she added. Since March 2020, she stated, she’s seen greater than 20 U.S. medical doctors within the pacific Northwest to handle extreme neurological, respiratory, and cardiac signs.
“I nonetheless don’t know if I'll make it," she stated in early August, on the eve of her first 12-hour flight to Mulheim. “I’m not trending in the correct course. I give myself 10 years, give or take, and the clock is working out.” Since contracting the virus in March 2020, her labs present elevated cytokines and markers for Lupus and autoimmune-related outcomes that counsel her physique is “attacking itself,” McCloskey defined.
Reached in February, McCloskey stated her signs had improved. “Earlier than I left for Germany I used to be bedridden and simply watched reveals and talked on Zoom all day… I positively had an enchancment in operate,” she stated, noting she was nonetheless experiencing ongoing neurological issues like reminiscence loss and fixed vertigo.
Tales of aid like that one, whether or not via stem cells, apheresis, or different treatment protocols, have filtered via support-group message boards and social media. One in all them reached Keith, an lawyer and long-hauler within the Southwest who was so determined to really feel regular once more that he determined to desert the U.S. medical system and search reprieve in Mexico.
Like Musser and McCloskey, Keith—who spoke below the situation his final identify be withheld, fearing he would possibly lose his legislation license—has taken remedy into his personal fingers. He stated he spent the final yr and a half crossing the border into Mexico to acquire treatment for what he described as neurological, vascular, and psychiatric post-COVID signs.
Though what he's doing is authorized, Keith stated, he worries that telling the general public about his journeys to Mexico would possibly injury his popularity.
“I do what I've to do. Whenever you’re sick, you want motion,” he advised The Each day Beast. “I've a variety of years I’m keen to stay this out. I can’t watch for the FDA.”
After contracting COVID-19 in March 2020, Keith stated, he initially may solely focus in 10-minute bursts, after which must cease working. He’s slowly improved cognitively, however isn’t again to his pre-COVID well being.
For months, Keith’s Lengthy COVID neuropsychiatric signs spiraled him into “all day, 24/7” suicidal ideation, he stated, describing his scenario as “life or demise.”
That’s when he began crossing the border each three weeks to refill on a cocktail of anti-virals, anti-parasitics, and different drugs, he stated. Since spring of 2021, Keith added, he has slowly improved, however isn't again to his pre-COVID-19 baseline.
“The journeys to Mexico didn’t treatment me,” he advised The Each day Beast.
Keith stated the protocol he tried was touted by the group Entrance Line COVID-19 Vital Care Alliance (FLCCCA), an outfit described as “fringe” by Scientific American that has plugged ivermectin, which, once more, is an unproven and controversial purported remedy for COVID-19.
The operation has not precisely shied away from right-wing politics basically. Medical doctors from FLCCCA marched towards vaccine mandates in Washington, D.C. on Jan. 23, citing them as “draconian,” in accordance with the group’s web site. The subsequent day, FLCCCA participated in a round-table dialogue on Capitol Hill towards vaccine mandates led by far-right Wisconsin U.S. Sen. Ron Johnson.
“Proper now I’m not conscious of any group that promotes ivermectin aggressively as being thought-about dependable,” stated Hotez.
However after visiting quite a few medical doctors, Keith stated, he determined to take part in analysis led by Dr. Bruce Patterson, a pathologist learning Lengthy COVID sufferers. Patterson is considered one of 4 medical doctors listed as having collaborated on “I-RECOVER” with FLCCCA, a Lengthy COVID remedy protocol made obtainable on-line. Drugs on it have included ivermectin. Lengthy-haulers have shared that data extensively on assist teams and on social media.
“Quite a lot of that stuff was floating round on-line, it might get into the boards,” stated Keith, noting that Patterson by no means acted as a prescribing physician. “I spent 10 hours a day on-line discovering remedy from the FLCCCA protocol.”
FLCCCA didn't reply to a number of requests for remark by The Each day Beast.
In a telephone dialog in January, Patterson stated he was not related to FLCCCA. He additionally stated he was now not suggesting ivermectin resulting from it not being efficient. Patterson added that he and his group had been beginning a randomized trial for a brand new remedy with controls that will probably be introduced within the spring.
When requested about Keith’s journeys to Mexico, Patterson suggested towards such a apply, calling it “extremely irregular and never primarily based on any suggestions from IncellDx,” the diagnostics firm he conducts his enterprise via.
Neither sufferers nor consultants know what long-term results COVID-19 might have on the physique and mind 5, 10, 15 years down the street. Because of the sheer numbers of circumstances, the person and public well being penalties and financial fallout from mass incapacity is probably huge.
Experimental therapies are a monetary gamble, too. Lengthy-haulers are sometimes burdened with unemployment, mounting medical debt, and a prolonged software course of for incapacity insurance coverage. And so they might not have the power to journey, leaving the phenomenon open for these of upper socioeconomic standing.
Or, like Musser, some might think about beginning a donation pool to obtain the therapies—or join medical trials. After he returned from Colombia, Musser participated in a trial the place he acquired monoclonal antibody remedy.
“It’s the Wild West,” he stated. “Individuals are keen to attempt nearly something if it'd give them aid.”
If there’s an opportunity at a reprieve from years of signs, “first-wavers” are keen to throw darts on the wall till one thing sticks. As with all dangers, there’s a possible payoff: aid. There’s additionally a possible loss: making their fragile well being situation worse.
They have an inclination to agree that the potential advantages outweigh any dangerous consequence.
However when requested about potential dangers of American sufferers who take part in medical tourism, an FDA spokesperson advised The Each day Beast that dangerous outcomes usually keep below the radar. “It’s very possible that hostile occasions are underreported by the well being care suppliers who deal with sufferers with these merchandise, and by sufferers who might have been harmed.”
As we speak, 23 months after getting COVID, the hammock Musser spent months mendacity in has been taken down. However in January, he warned that he couldn’t communicate for lengthy intervals of time as a result of it was too exhausting. His voice was weak and crackled with labored respiratory. He advised The Each day Beast that a couple of days after testing optimistic once more, his Lengthy COVID signs like muscle weak point, problem respiratory, blurred imaginative and prescient, vertigo, and insomnia had reemerged.
Currently, Musser stated, he felt hopeless.
“I don’t know if the stem cell remedy was detrimental to my well being,” he stated. “I don’t assume we’ll ever know.”
However that hasn’t totally swayed him towards ready for the U.S. regulatory course of to play out. When requested if he was keen to attempt extra experimental therapies, Musser stated he wasn’t certain, however leaned towards sure, relying “on the remedy” and “if I may also help push the science ahead, as a result of I owe it to myself and the Lengthy COVID group.”
Musser added that when he returns to full well being, he plans to burn the hammock he laid in throughout these early months. It’ll be a form of ceremony marking the tip of a hellish chapter—or so he hopes.
In case you or a beloved one are fighting suicidal ideas, please attain out to the Nationwide Suicide Prevention Lifeline at 1-800-273-TALK (8255), or contact the Disaster Textual content Line by texting TALK to 741741.