This is a MedPage Today story.
With long COVID patients becoming increasingly frustrated with the lack of available treatments, some have taken to traveling to Cyprus, Germany and Switzerland for experimental "blood washing," according to a recent investigation by The BMJ and ITV News.
Over the past year, people experiencing this often debilitating condition have visited private clinics for apheresis, a blood filtering treatment normally used for patients with lipid disorders, where they are also given anticoagulants, citing the hypothesis that "symptoms of long COVID are caused by small clots in the blood that are blocking the flow of oxygen through capillaries," wrote Madlen Davies, investigations editor for The BMJ.
While doctors in most European countries can offer experimental treatments or off-label drugs to patients if they feel there is a benefit, and if they explain the risks and obtain consent, one such apheresis clinic, the Long Covid Center in Cyprus, asks patients to sign away their right to sue the clinic as part of their consent process, Davies noted.
Moreover, many fear that desperate patients are shelling out large sums of money for treatments that are both invasive and unproven, she added.
"It's unsurprising that people who were previously highly functioning, who are now debilitated, can't work, and can't financially support themselves, would seek treatments elsewhere. It's a completely rational response to a situation like this," Shamil Haroon of the University of Birmingham in England, who studies long COVID, told The BMJ. "But people could potentially go bankrupt accessing these treatments, for which there is limited to no evidence of effectiveness."
Haroon said the kinds of experimental treatments long COVID patients are seeking at private clinics offering apheresis and anti-clotting drugs should only happen in the context of a clinical trial.
However, Dr. Beate Jaeger, who has treated thousands of long COVID patients with apheresis at her clinic in Mülheim, Germany, told The BMJ that trials would take too long for these patients who are desperately ill.
In addition to the experimental nature of the treatment and its potential expense, some experts have expressed concerns about the lack of follow-up care for patients after they leave these clinics, Davies said.
Anticoagulation should be given by clinicians who regularly follow up with patients, Amitava Banerjee, a cardiologist in London and long COVID researcher, told The BMJ. Bleeding could present as something as mild as bruising or nosebleeds, or could be severe, such as a brain hemorrhage.
"I'm concerned that this has been pushed in a vulnerable group," she said.
Davies described one patient, Gitte Boumeester, a trainee psychiatrist in Almelo, the Netherlands, who contracted COVID-19 in November 2020 and began experiencing extreme fatigue, brain fog, heart palpitations, shortness of breath, and chest pain shortly thereafter. Boumeester underwent multiple tests, but clinicians could find nothing wrong. She ultimately left her job the next November after two failed attempts to return to work.
After joining a Facebook group for long COVID patients, Boumeester learned of the Long Covid Center in Cyprus, which offers a specific type of apheresis -- heparin-induced extracorporeal LDL precipitation, or HELP apheresis -- during which the blood filters out unwanted lipids and proteins, a process that reduces the "stickiness" of the blood and improves microcirculation, according to the center.
Boumeester decided to travel to Cyprus after reading testimonials and research on the center's website and the Facebook page of the Apheresis Association, a group with nearly 5,000 members that promotes apheresis for long COVID, with posts proclaiming, "Over 80% of patients report to keep their gains permanently" and "There are no known risks."
Boumeester was treated there in March, traveling once or twice a week to the Long Covid Center, as well as the Poseidonia clinic, located next door, for add-on treatments, such as hyperbaric oxygen and vitamin infusions. Two months later, Boumeester returned home, having spent the equivalent of about $18,000, with no improvement in her symptoms.
Both the Long Covid Center and the Apheresis Association are run by Markus Klotz, an Austrian businessman, who threw himself into these endeavors after experiencing long COVID himself, Davies wrote.
Klotz told The BMJ that "we as a clinic do neither advertise, nor promote," adding "we accept patients that have microcirculation issues and want to be treated with HELP apheresis ... If a patient needs a prescription, it is individually assessed by our doctor or the patient is referred to other specialized doctors where needed."
A spokesperson for the Poseidonia clinic told The BMJ that all treatments offered are "always based on medical and clinical evaluation by our doctors and clinical nutritionist, diagnosis via blood tests with lab follow-ups as per good medical practice."