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 contagious coronavirus, a significant proportion of patients develop lingering, sometimes debilitating symptoms — also known as Long Covid. Estimates of how many Covid patients experience long-term symptoms vary significantly. But the US Centers for Disease Control and Prevention recently estimated that almost one in five Covid patients reports persistent symptoms. With hundreds of millions of Covid-19 cases reported worldwide, even the more modest estimates still suggest tens of millions are having lasting effects.
But while these patients seek effective treatment, researchers strive 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 can’t provide an evidence-based treatment, 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.
There are already reports in the US 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 BMJrevealed that thousands of patients with long-term Covid are traveling to private clinics in different countries – including Switzerland, Germany and Cyprus – to undergo blood filtering or apheresis, which has been shown not to be suitable for treating long-term Covid.
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 patients with long-term Covid-19 illness, 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 North Rhine Lipid Center in Germany and has started treating patients who have long had Covid, is promoting the method, which involves filtering blood through a heparin filter. She also prescribes a cocktail of anticoagulant drugs to patients with long-term Covid-19 disease.
Jaeger hypothesizes that the blood of people with long Covid is too viscous and contains small blood 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, said The BMJ and ITV that the treatment is premature. For one, researchers don’t understand how microclots form, whether apheresis and anticoagulants reduce them, and whether a 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’s obvious one’s bleeding,” Ariens said.
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 questioned a woman in the Netherlands, Gitte Boumeester, who paid more than $60,000 – almost all of her life savings – for treatment at a new long Covid clinic in Cyprus after seeing positive anecdotes online. The woman, desperate for relief from her long-standing Covid symptoms, signed a dubious consent form full of 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 Cypriot clinic, Boumeester received a range of other unproven treatments alongside apheresis, including vitamin infusions, 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 had seen no improvement in her debilitating symptoms, which include palpitations, chest pain, shortness of breath and brain fog.
“I think they should put more emphasis on the experimental nature of the treatments, especially because they’re so expensive,” Boumeester said. “Before I started I knew the outcome was uncertain, but everyone in the clinic is so positive that you believe it and get your hopes up.”
This story originally appeared on Ars Technica.