The COVID-19 pandemic is viewed by many experts as a mass disability event. Although most people fully recover from a battle with the highly infectious coronavirus, a significant proportion of patients develop lingering, sometimes debilitating symptoms — also known as Long COVID. Estimates of how many COVID patients will develop long-term symptoms can vary significantly. But the US Centers for Disease Control and Prevention recently estimated that nearly one in five COVID patients reports persistent symptoms. With hundreds of millions of COVID-19 cases reported worldwide, even the more modest estimates would still suggest tens of millions are having lasting effects.
However, while these patients seek effective treatment, researchers are still striving to define, understand, and treat this new phenomenon. Many patients have reported tough battles for care and relief, including long waits in clinics and few treatment options when visiting a care provider.
Cue the quacks. This situation is ripe for unscrupulous players to step in and offer unproven products and treatments – likely at exorbitant prices. It’s a tried and true model: when modern medicine isn’t yet able to offer evidence-based treatments, quacks sneak in to comfort the distressed, untreated patients. Amid their sympathetic platitudes, they chide modern medicine, scowl at callous doctors, and scoff at the slow pace and high cost of clinical trials. With any ill-gotten trust, these bad actors can peddle unproven treatments and false hopes.
In the US, there are already reports of such unproven long-term COVID treatments such as dietary supplements, vitamins, IV fluids, fasting, ozone therapy, and off-label prescription drugs. However, a British study published this week highlights a growing international trend for expensive “blood washing” treatments.
The investigation, conducted by British news agency ITV News and the British Journal of Medicine, found thousands of long-illness COVID patients traveling to private clinics in different countries – including Switzerland, Germany and Cyprus – to get blood filtering or to undergo apheresis It has not been proven to treat COVID for long.
Apheresis is an established medical therapy, but it is used to treat certain conditions by filtering out known problematic blood components, such as leukemia.
In long COVID patients, apheresis treatments appear to be used to remove a variety of things that may or may not be problematic. These include LDL and inflammatory molecules, a strategy originally developed to treat people with cardiovascular disease. Internist Beate Jaeger, who runs the Lipidzentrum Nordrhein in Germany and has started treating long-term COVID patients, is promoting the method, which involves filtering blood through a heparin filter. She also prescribes a cocktail of anticoagulants to long COVID patients.
Jaeger hypothesizes that the blood of people with long COVID is too viscous and contains small clots. She suggests that thinning the blood with medication and apheresis can improve microcirculation and overall health. But there is no evidence that this hypothesis is correct or that the treatment is effective. When Jaeger tried to publish her hypothesis in a German medical journal, she was rejected.
Robert Ariens, professor of vascular biology at the University of Leeds School of Medicine, told the BMJ and ITV that the treatment was premature. For one, researchers don’t understand how microclots form, whether apheresis and anticoagulants reduce them, and whether reduction would even matter for disease. “Unless we know the mechanisms by which the microclots form and whether or not they are disease-causing, it seems premature to develop a treatment to clear the microclots, since both apheresis and triple anticoagulation are not without risks , it is obvious one is bleeding,” said Ariens.
Jaeger, meanwhile, defended treating patients despite a rejected hypothesis and lack of evidence. She has expressed anger at “dogmatism” in medicine, claiming that her clinic has treated patients who came and went in wheelchairs. “When I see a child in a wheelchair suffering for a year, I prefer to treat them and not wait for 100 percent proof,” she said.
And Jaeger is not alone; other clinics have also started offering apheresis for long COVID. The UK inquiry interviewed a woman in the Netherlands, Gitte Boumeester, who paid more than $60,000 – almost all of her savings – for treatment at a new long-running COVID clinic in Cyprus after seeing positive anecdotes online. The woman, desperate for relief from her long COVID symptoms, signed a dubious consent form riddled with misspellings, grammatical errors and half-finished sentences waiving her rights.
Daniel Sokol, a London barrister and medical ethicist, said the form was invalid under English and Welsh law. “You can’t say, ‘By the way, agree not to sue us if we horribly injure you or kill you, even if it’s through our own negligence,'” he told investigators. “You can not.”
At the Cyprus Clinic, Boumeester received a range of other unproven treatments in addition to apheresis, including vitamin IVs, hyperbaric oxygen treatment, anticoagulants and hydroxychloroquine, which is notoriously ineffective against COVID-19. After two months in Cyprus, during which she underwent various treatments and drained her bank account, Boumeester said she saw no improvement in her debilitating symptoms, which include palpitations, chest pain, shortness of breath and brain fog.
“I think they should emphasize the experimental nature of the treatments more, especially since it’s so expensive,” Boumeester said. “It was clear to me from the start that the result was uncertain, but everyone in the clinic is so positive that you believe it and have hopes.”