April 28, 2023 – From fad diets and vitamins to “blood purification” and stem cell therapy, Long COVID patients are desperately looking for experimental therapies to search out hope and relief from their debilitating symptoms. But doctors are concerned concerning the potential harm – each physical and financial – that a few of these unproven and overhyped treatments could cause.
More than three years into the pandemic, there are still no established, effective interventions or remedies – let alone a cure – for patients fighting post-COVID symptoms, leaving many willing to try unconventional treatments, including those offered without close medical oversight.
“Because many of our patients have had their symptoms for so long and have been suffering for so long, they seem to be at a slightly higher risk from internet quacks,” said Dr. Alexander Truong of Emory University School of Medicine, a pulmonologist who also runs a long-term COVID clinic in Atlanta. “I can't blame them.”
Many patients suffer from brain fog, extreme fatigue and severe headaches – symptoms that may severely impact their quality of life and leave them unable to work. This level of misery and distress might be difficult to measure, but Diana Güthe, founding father of Survivor Corps, noted that an off-the-cuff Facebook survey the COVID-19 support group conducted amongst its members in 2022 found that almost half of the respondents stated that he had considered suicide.
“That's where people are in terms of hopelessness,” she said. Recently married, her husband's first wife died by suicide in 2021 after developing severe post-COVID problems following an asymptomatic COVID-19 infection, Güthe said. She herself, who has now fully recovered, also struggled with “terrible” headaches and deep pain in her inner ear for a 12 months.
“Blood washing” and stem cell therapies
Doctors who run post-COVID clinics are frequently asked about unproven treatments that their patients hear or examine in support groups. These groups have been a lifeline for a lot of, however the therapies some promote may also related to risksSome treatment claims – comparable to the misuse of the antiparasitic drug ivermectin – persistently make the roundssay experts, even though it has been linked to illness and death and has been widely refuted.
Other requests come from for-profit firms making long-term COVID guarantees online.
“I get very nervous when people come to me and say, 'Oh, I'm on Facebook and I get this ad from this company that wants my blood to tell me if I have Long COVID,'” says Dr. Michael Peluso, an infectious disease doctor and assistant professor of drugs on the University of California, San Francisco.
One expensive experimental treatment currently being studied is “blood washing,” or apheresis, a proven blood filtering procedure used for quite a few blood disorders and for blood donation. Some researchers imagine apheresis could help patients with long COVID syndrome by tiny microclots This can clog sensitive capillaries and cut off the tissue from oxygen supply.
But there may be no published data from randomized, controlled clinical trials that document its effectiveness. Critics indicate that it stays unclear how these clots form and whether or not they are a marker or the actual reason behind the disease.
A Investigation in 2022 from the magazine The BMJfound, for instance, that patients traveled to personal clinics in Europe for the invasive procedure and were prescribed anti-blood clot medication without adequate aftercare. One patient spent just about all her savings, but there was no improvement. The patient's consent form from at the very least one clinic was also considered “inadequate” by lawyers and health care providers. The editor-in-chief of the medical journal called apheresis a “miracle cure sold on the basis of a hope hypothesis.”
Doctors say other expensive experimental treatments, comparable to stem cell therapy, are also based on hope.
“Stem cells are widely considered a cure and hope for all these different types of diagnoses – from spinal cord injuries, strokes, brain injuries to long COVID,” says Dr. Monica Verduzco-Gutierrez, a physical medicine and rehabilitation physician who makes a speciality of brain injury medicine and now runs a post-COVID recovery program and clinic in San Antonio, Texas. “But we just don't have the studies yet to say, 'Oh yeah, stem cells are definitely going to help.'”
Some clinics may claim to be reputable, make big guarantees without providing clinical evidence, base their trials on poorly designed studies or extremely small sample sizes, or charge patients a fee to take part in clinical trials, Verduzco-Gutierrez says.
Thousands of clinics within the United States are marketing their stem cell therapies on to consumers, based on a study by Dr. Leigh Turner, a professor of health, society and behavior on the University of California, Irvine.
But lots of the products are unapproved, unproven and have caused serious harm, he reported in at the very least two journal articles published in 2021. Cell stem cell And Stem Cell ReportsThe FDA issued a warning in 2019 against unscrupulous clinics and the risks of unproven stem cell treatments.
“The search for cell-based COVID-19 treatments has also been fraught with exaggerated claims, disregard for important regulatory, scientific and ethical norms, and distorted communication of research results,” Turner wrote.
Some therapeutic candidates could have undergone pilot studies, proof-of-concept testing or small studies, but they still have to undergo further testing in a bigger population, which will not be all the time possible.
A small, randomized controlled trial For example, suggested that hyperbaric oxygen therapy relieved some symptoms of long COVID, however the expensive treatment is amazingly difficult to check on a big scale, said Dr. Zachary Schwartz, director of the Post-COVID-19 Recovery Clinic at Vancouver General Hospital in Canada. A hyperbaric oxygen chamber is used to treat decompression sickness, carbon monoxide poisoning or individuals with severe wounds.
“It's not a treatment protocol that's manageable at the scale we need for the number of people suffering from post-COVID-19 syndrome, like putting them in a hyperbaric chamber every day for 30 days,” Schwartz said, adding that it's also unclear whether those improvements are even everlasting.
Unregulated products and financial risks
Other noninvasive treatments are not any cheaper and potentially dangerous, doctors said. Dietary supplements, for instance, are not regulated by the FDA like drugsmaking the purity and safety of the ingredients, in addition to their effectiveness, difficult to measure. When taking supplements, you must all the time seek the advice of your doctor and pharmacist to make certain there are not any dangerous interactions with regular medications, too, they advise.
Beyond the plain risks to physical health, doctors are also concerned concerning the aggressive marketing approach and the financial impact on vulnerable patients.
“It’s not just about the medical and health toxicity, but also the potential financial toxicity,” said Linda Geng, MD, PhD, assistant professor of drugs at Stanford University and co-director of the varsity’s Post-Acute COVID-19 Syndrome Clinic.
Some estimate that hyperbaric oxygen therapy from alternative health practitioners can cost as much as $100 or $200 per session. A house medical device can cost $1,000, while supplements can easily run into the lots of or hundreds of dollars.
“I have had patients who have spent thousands and thousands of dollars [for] unfounded hopes,” Geng said.
“Some of them are already struggling because they can't work or have to work less and can't make ends meet. … I haven't found or heard of anything that has really helped them.”
Certainly, post-COVID clinics are testing different strategies that will not be yet fully understood, doctors say. The range of symptoms patients experience often bears similarities to known conditions with existing therapies and medicines, but doctors say any repurposing of those drugs ought to be done under medical supervision and with full transparency.
If it's too good to be true
The extent to which patients are looking for alternative treatment options reflects their frustration with the shortage of urgency and progress in clinical research on long-Covid treatments, advocates say.
“There are very, very, very few long-term studies on COVID therapies, and people are really hesitant,” said Peluso of the University of California-San Francisco. “It's 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 recruitment of participants and conduct of clinical trials have been slow, and there is no such thing as a clear leadership, coordination, transparency or communication from the agency or amongst clinics.
“When we talk about focusing on these scams, I think that's a diversionary tactic. It distracts attention from the real problem,” said Güthe of Survivor Corps, who’s critical of the NIH.
Until major progress is made, Long COVID patients will likely proceed to try experimental or unproven therapies to search out relief. Experts advise all the time talking to your doctor or specialist.
“I tell people: If it sounds too good to be true, it probably is,” Schwartz said.