April 28, 2023 -- From fad diets and vitamins to “blood washing” and stem cell therapy, long COVID patients are seeking out experimental therapies in a desperate bid to find hope and relief from debilitating symptoms. But doctors worry about the potential harm – both physical and financial – some of these unproven and overhyped treatments could cause.
More than 3 years after the pandemic hit, there are still no established, effective interventions or tools – let alone a cure – for patients grappling with post-COVID symptoms. That is leaving many willing to try unconventional treatments, including those being offered without close medical oversight.
“Because a lot of our patients have had their symptoms for such a long time and they've suffered for such a long time, they seem to be a little bit more at risk for snake oil salesmen from the internet,” said Emory University School of Medicine’s Alexander Truong, MD, a pulmonologist who also runs a long COVID clinic in Atlanta. “I can't blame them.”
Many patients deal with brain fog, extreme fatigue, and severe headaches -- symptoms that may severely affect their quality of life and can render them unable to work full-time. That level of misery and hardship can be difficult to measure, but Diana Güthe, founder of Survivor Corps, noted that an informal Facebook poll the COVID-19 support group took of its members in 2022 found that nearly half the respondents reported thinking about suicide.
“That’s where people are in terms of lack of hope,” she said. Recently married, her husband’s first wife died by suicide in 2021 after she developed severe post-COVID issues following an asymptomatic COVID-19 infection, Güthe said. She herself, now fully recovered, also dealt with “excruciating” headaches for a year and deep inner ear pain.
‘Blood Washing’ and Stem Cell Therapies
Doctors who run post-COVID clinics are regularly asked about unproven treatments their patients hear or read about from support groups. These groups have been a lifeline for many, but the therapies some promote can also come with risks. Some treatment claims – like the misuse of antiparasitic drug ivermectin – persistently make the rounds, experts say, despite having been associated with illness, death, and extensively debunked.
Other inquiries stem from for-profit companies pitching long COVID promises online.
“I get very nervous when people come to me saying, ‘Oh, I'm on Facebook, I’m getting these advertisements from this company that wants my blood to tell me if I have long COVID,’” said Michael Peluso, MD, an infectious diseases doctor and assistant professor of medicine at the University of California, San Francisco.
One costly experimental treatment under scrutiny is “blood washing,” or apheresis, a well-established blood filtering procedure used for a range of blood disorders and in the collection of blood donations. Some researchers believe apheresis could benefit long COVID patients by getting rid of tiny microclots that may be clogging delicate capillaries and cutting off oxygen to tissue.
But there is no published data from randomized, controlled clinical trials documenting its effectiveness. Critics caution that it remains unclear how these clots are formed and whether they are a marker or the actual cause of disease.
An investigation in 2022 by the journal The BMJ, for example, found that patients were traveling to private clinics in Europe for the invasive procedure and being prescribed anti-clotting medication without sufficient follow-up care. One patient spent nearly all her savings, yet saw no improvement. The patient consent form from at least one clinic was also considered “inadequate” according to lawyers and health care providers. The medical journal’s editor in chief called apheresis a “miracle cure sold on a hypothesis of hope.”
Doctors say other expensive experimental treatments, such as stem cell therapy, are also being sold on hope.
“Stem cells in general have been seen as this cure and hope for all these different types of diagnoses – from spinal cord injury, strokes, brain injuries, to now, long COVID,” said Monica Verduzco-Gutierrez, MD, a physical medicine and rehabilitation doctor who specializes in brain injury medicine and now runs a post-COVID recovery program and clinic in San Antonio, TX. “But we just don’t have the trials yet to say, ‘Oh yes, stem cells are going to definitely help.’”
Some clinics may claim they are legitimate, make big promises without presenting clinical evidence, or base them on poorly designed studies or extremely small sample sizes, or ask patients to pay to participate in a clinical trial, said Verduzco-Gutierrez.
Thousands of clinics in the U.S. market their stem cell therapies directly to consumers, according to research by Leigh Turner, PhD, a professor of health, society, and behavior at University of California, Irvine.
But many of the products are unlicensed, unproven, and have caused serious harm, he reported in at least two journal papers published in 2021, Cell Stem Cell and Stem Cell Reports. The FDA issued a warning in 2019 against unscrupulous clinics and the dangers of unproven stem cell treatments.
“The search for cell-based COVID-19 treatments has also been fraught with hyperbolic claims; flouting of crucial regulatory, scientific, and ethical norms; and distorted communication of research findings,” Turner wrote.
Some therapeutic contenders may have undergone test pilot studies, proof-of-concept trials, or small studies, but need further testing with a bigger population group, which may not always be possible.
One small, randomized, controlled study suggested that hyperbaric oxygen therapy improved some long COVID symptoms, for example, but the expensive treatment is extremely difficult to study on a large scale, said Zachary Schwartz, MD, head of the Post-COVID-19 Recovery Clinic at Vancouver General Hospital in Canada. A hyperbaric oxygen chamber is used to treat the bends in scuba diving, carbon monoxide poisoning, or people with severe wounds.
“It’s not a treatment protocol that is very manageable at a scale that we need for the amount of individuals suffering from post COVID-19 syndrome, such as putting them into a hyperbaric chamber every day for 30 days,” Schwartz said, adding that it is also unclear if these improvements even last.
Unregulated Products and Financial Risks
Other noninvasive treatments are no less expensive and potentially risky, doctors said. Health supplements, for example, are not regulated by the FDA like drugs, making the purity and safety of the ingredients and their effictiveness difficult to measure. If you take supplements, you should always consult your doctor and pharmacist to ensure there are also no dangerous interactions with any regular medication, they advise.
Beyond the obvious physical health risks involved, doctors also worry about predatory marketing and the financial impact on vulnerable patients.
“It’s not just the medical and health toxicity, but also the potential financial toxicity,” said Linda Geng, MD, PhD, an assistant professor of medicine at Stanford University and co-director of the school’s Post-Acute COVID-19 Syndrome Clinic.
Hyperbaric oxygen therapy through alternative health care providers may cost as much as $100 or $200 a session, some estimate. A home medical device may cost $1,000, while supplements can quickly add up to hundreds or thousands of dollars.
“I’ve had patients who spent thousands and thousands of dollars [for] unfounded hopes,” said Geng.
“Some of them are already struggling because they can’t work or have to reduce work and they can’t make ends meet. ... I have yet to find or hear of anything that has really helped them.”
To be sure, post-COVID clinics do explore different strategies that have yet to be fully studied, doctors say. The range of symptoms patients experience often bear similarities to known conditions with existing therapies and drugs, but doctors say repurposing them should be done under medical supervision and with full transparency.
If It’s Too Good to Be True
The extent to which patients are seeking alternative treatments speaks to the frustration they feel about the lack of urgency and progress being made in clinical research of long COVID treatments, advocates say.
“There are very, very, very few long COVID therapeutic trials and people have really been dragging their feet,” said University of California-San Francisco’s Peluso. “It’s been very frustrating. That's why we're in this situation.”
The National Institutes of Health received $1.15 billion in long COVID funding in February 2021, but critics say progress in recruiting participants and launching clinical trials has been slow, with no clear leadership, coordination, transparency, and communication from the agency or between clinics.
“When we talk about focusing on these scams, I think it's a red herring. It's taking the attention away from the real problem,” said Survivor Corps’ Güthe, who has been critical of the NIH.
Until greater progress is made, long COVID patients are likely to continue trying experimental or unproven therapies to find some relief. Always speak with your doctor or specialist, experts advise.
“What I tell people is that if it sounds too good to be true, it probably is,” said Schwartz.