This is a story from MedPage Today.
As long-term COVID patients grow increasingly frustrated with the lack of available treatments, some have traveled to Cyprus, Germany and Switzerland for experimental “bloodwashing,” according to a recent study by The BMJ and ITV News.
In 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 also receive anticoagulants, citing the hypothesis that “prolonged COVID symptoms are caused by tiny clots in the blood that block oxygen flow through capillaries,” wrote Madlen Davies, research editor for The BMJ.
While doctors in most European countries can offer experimental treatments or off-label drugs to patients if they believe there is a benefit, and if they explain the risks and get approval, one such apheresis clinic, the Lung Covid Center in Cyprus, is asking. , patients to sign away their right to sue the clinic as part of their consent process, Davies noted.
In addition, many fear that desperate patients will spend large sums of money for treatments that are both invasive and unproven, she added.
“It is not surprising that people who used to function very well, who are now weakened, unable to work and support themselves financially, would seek treatment elsewhere. It is a completely rational response to a situation like this,” Shamil Haroon of the The University of Birmingham in England, which has been studying COVID for a long time, told The BMJ. “But people could potentially go bankrupt if they access these treatments, for which there is limited to no evidence of effectiveness.”
Haroon said the kind of experimental treatments that COVID patients are looking for in private clinics offering apheresis and anticoagulants should only take place in the context of a clinical trial.
dr. However, Beate Jaeger, who has treated thousands of long-term COVID patients with apheresis at her clinic in Mülheim, Germany, told The BMJ that trials would take too long for these patients who are critically ill.
In addition to the experimental nature of the treatment and the potential costs, 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 monitor patients, Amitava Banerjee, a cardiologist in London and a longtime COVID researcher, told The BMJ. Bleeding can present as something as mild as bruising or nosebleeds, or can be severe, such as a brain hemorrhage.
“I am concerned that this has been pushed into a vulnerable group,” she said.
Davies described one patient, Gitte Boumeester, a psychiatrist in training in Almelo, the Netherlands, who contracted COVID-19 in November 2020 and soon after began experiencing extreme fatigue, brain fog, palpitations, shortness of breath and chest pain. Boumeester went through multiple tests, but clinicians couldn’t find anything wrong. She finally left her job in November the following year after two failed attempts to return to work.
After joining a Facebook group for long-term 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 – in which the blood contains unwanted lipids. and proteins, a process that reduces blood “stickiness” and improves microcirculation, the center said.
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 of nearly 5,000 members promoting apheresis for long-term COVID, with posts stating: “More than 80% of patients report their gains permanently” and “There are no known risks.”
Boumeester was treated there in March and traveled once or twice a week to the Lung Covid Center and the adjacent Poseidonia clinic for additional treatments, such as hyperbaric oxygen and vitamin infusions. Two months later, Boumeester returned home with 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 plunged into these efforts after experiencing COVID for a long time himself, Davies wrote.
Klotz told The BMJ that “as a clinic we do not advertise nor promote,” adding, “we accept patients with microcirculation problems and want to be treated with HELP apheresis … If a patient needs a prescription, they will this is individually assessed by our physician or the patient is referred to other specialist physicians as necessary.”
A spokesperson for the Poseidonia Clinic told The BMJ that all treatments offered are “always based on medical and clinical evaluation by our physicians and clinical nutritionist, diagnosis via blood work with laboratory follow-up in accordance with good medical practice.”