This is a story from MedPage Today.
With long COVID patients growing increasingly frustrated with the lack of available treatments, some have decided to travel to Cyprus, Germany and Switzerland for an experimental ‘blood wash’, according to a recent survey by the BMJ and ITVNews.
Over the past year, people with the often debilitating disease have been going to private clinics for apheresis, a blood-filtering treatment normally used for patients with lipid disorders, where they are also given blood thinners. , citing the hypothesis that “the symptoms of long COVID are caused by small clots in the blood that block the flow of oxygen through the capillaries,” wrote Madlen Davies, Surveys 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 obtain consent, one of these clinics apheresis, the Long Covid Center in Cyprus, is asking patients to waive their right to sue the clinic as part of their consent process, Davies noted.
In addition, many fear that desperate patients will shell out large sums of money for treatments that are both invasive and unproven, she added.
“It’s no surprise that people who used to function very well, who are now impaired, can’t work and can’t support themselves financially, seek treatment elsewhere. It’s a completely rational response to a situation like this,” Shamil Haroon of the University of Birmingham in England, who has long studied COVID, told the BMJ. “But people could potentially go bankrupt by accessing these treatments, for which there is no evidence of effectiveness.”
Haroon said the kinds of experimental treatments that COVID patients have long sought from private clinics offering apheresis and anticoagulant drugs should only happen in 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 the trials would take too long for these desperately ill patients.
In addition to the experimental nature of the treatment and its potential expense, some experts have raised concerns about the lack of follow-up care for patients after they leave these clinics, Davies said.
Anticoagulation should be given by clinicians who follow patients regularly, Amitava Banerjee, a London cardiologist and 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’m afraid it was pushed into a vulnerable group,” she said.
Davies described a 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 soon after. Boumeester underwent several tests, but clinicians found nothing abnormal. She finally quit her job the following November after two failed attempts to return to work.
After joining a Facebook group for long-time COVID patients, Boumeester discovered 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 blood “stickiness” and improves microcirculation, according to the center.
Boumeester decided to travel to Cyprus after reading testimonials and research on the center’s website and on the Facebook page of the Apheresis Association, a group of nearly 5,000 members that has been promoting apheresis for a long time. of COVID, with messages proclaiming: “Over 80% of patients report keeping their gains permanently” and “There are no known risks”.
Boumeester was treated there in March, visiting the Long Covid Center once or twice a week, as well as the Poseidonia Clinic next door, for complementary treatments, such as hyperbaric oxygen and vitamin infusions. Two months later, Boumeester returned home, having spent the equivalent of approximately $18,000, with no improvement in her symptoms.
The Long Covid Center and the Apheresis Association are both led by Markus Klotz, an Austrian businessman, who embarked on these efforts after experiencing a long COVID himself, Davies wrote.
Klotz told the BMJ that “we, as a clinic, do not advertise or promote”, adding “we accept patients who have microcirculation problems and wish to be treated with HELP apheresis … If a patient needs of a prescription, it is assessed individually by our doctor or the patient is referred to other specialized doctors if necessary.”
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 our clinical nutritionist, diagnosis via blood tests with laboratory follow-ups in accordance with good practice medical”.