The Covid-19 pandemic is considered by many experts to be a massive debilitating event. While most people make a full recovery from a battle with the highly contagious coronavirusa significant proportion of patients develop persistent, sometimes debilitating symptoms, known as long Covid. Estimates of how much Covid patients who experience long-term symptoms vary considerably. But the US Centers for Disease Control and Prevention recently estimated that: almost one in five Covid patients report persistent symptoms. With hundreds of millions of Covid-19 cases reported around the world, even the more modest estimates still suggest tens of millions have lasting effects.
But as those patients seek effective care, researchers struggle to define, understand and treat this new phenomenon. Many patients have reported uphill struggles to find care and relief, including long wait times in clinics and few treatment options when they see a healthcare provider.
Cue the quacks. This situation is ripe for unscrupulous actors to step in and offer unproven products and treatments – probably at exorbitant prices. It’s a tried and true model: When modern medicine is unable to provide evidence-based treatment, quacks slip in to comfort the desperate, untreated patients. Amid their sympathetic platitudes, they rebuke modern medicine, mock insensitive physicians, and mock the slow pace and high price of clinical trials. With any ill-gotten trust they deserve, these bad actors can spread unproven treatments and false hopes.
There are already reports in the US of such unproven long-term Covid treatments, such as supplements, vitamins, infusions, fasting, ozone therapy and prescribing off-label drugs. But a British study published this week points to a growing international trend of expensive “bloodwashing” treatments.
Precious cleaning
The researchperformed by UK outlet ITV News and the BMJrevealed that thousands of long-term Covid patients travel to private clinics in several countries – including Switzerland, Germany and Cyprus – to receive blood filtering or apheresis, which have not been proven to treat long-term Covid.
Apheresis is an established medical therapy, but it is used to treat specific conditions by filtering out known problematic components of blood, such as filtering out low-density lipoprotein (LDL) in people with persistent high cholesterol, or removing malignant white blood cells. in people with leukemia.
In the case of long-term Covid patients, it seems that apheresis treatments are being used to remove a variety of things that may or may not be problematic. That includes LDL and inflammatory molecules, a strategy initially designed to treat people with cardiovascular disease. Internal medicine physician Beate Jaeger, who runs the Nordrhein Lipid Center in Germany and has started treating long-term Covid patients, touts the method, which involves filtering blood through a heparin filter. She also prescribes a cocktail of anticoagulants for long-covid patients.
Jaeger hypothesizes that the blood of people with long-term Covid is too viscous and contains small blood clots. She suggests that thinning the blood with drugs 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, it 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 starters, researchers don’t understand how microclots are formed, whether apheresis and anticoagulants reduce them, or whether a reduction even matters for disease. “Unless we know the mechanisms by which the microclots form and whether or not they are pathogens, it would seem premature to design a treatment to abolish the microclots, as both apheresis and triple anticoagulation are not without risks, the obvious one of which is bleeding,” Ariens said.
False hope
Jaeger, meanwhile, defended the treatment of patients despite a rejected hypothesis and a lack of evidence. She expressed her anger at “dogmatism” in medicine, claiming that at her clinic she had treated patients who arrived in wheelchairs but walked away. “When I see a child in a wheelchair suffer for a year, I prefer to treat and not wait for 100 percent proof,” she said.
And Jaeger isn’t alone; other clinics have also started offering apheresis for long-term Covid. The British investigation 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-covid clinic in Cyprus after seeing positive anecdotes online. The woman, desperate for relief from her long-standing Covid symptoms, signed a questionable consent form filled with spelling mistakes, grammatical errors and half-finished sentences that waived her rights.
Daniel Sokol, a London lawyer and medical ethicist, said the form would be invalid under English and Welsh law. “You cannot say, ‘By the way, you agree not to sue us if we inflict horrific injuries or kill you, even if it is through our own negligence,'” he told the investigators. “You can not do that.”
At the Cypriot clinic, Boumeester received a range of other unproven treatments along with the apheresis, including vitamin infusions, hyperbaric oxygen treatment, anticoagulants, and hydroxychloroquinethat is notoriously ineffective against Covid-19. After two months in Cyprus, subjecting herself to various treatments and draining her bank account, Boumeester said, she had seen no improvement in her debilitating symptoms, including palpitations, chest pain, shortness of breath and brain fog.
“I do think they should emphasize the experimental nature of the treatments more, especially because it’s so expensive,” Boumeester said. “I realized before I started that the outcome was uncertain, but everyone in the clinic is so positive that you start to believe it too and you get hope.”
This story originally appeared on Ars Technica.