Long Covid patients seek experimental ‘bloodwash’ treatment abroad, survey finds
Newswise – Thousands of people suffering from the debilitating symptoms of long covid are traveling abroad to seek expensive but unproven treatments such as ‘blood washing’, a survey by The BMJ and ITV News published today.
Patients are traveling to private clinics in Cyprus, Germany and Switzerland for apheresis – a blood filtering treatment normally used for patients with lipid disorders who have not responded to medication – and anticoagulant therapy.
But experts question whether these invasive therapies should be offered without sufficient evidence.
ITV News visited a private clinic in Cyprus and spoke with its co-founder Marcus Klotz and several patients. The full report by ITV News Science Editor Deborah Cohen will air on 13/07/2022 on ITV Evening News at 6.30pm and ITV News at Ten.
The World Health Organization (WHO) has estimated that between 10% and 20% of patients suffer from symptoms for at least two months after an acute infection with covid-19 – a phenomenon commonly referred to as long covid.
According to the latest official data, as of May 1, almost two million people in the UK were reporting long-lasting symptoms of covid, which can include fatigue, muscle weakness, difficulty breathing and sleeping, memory problems, anxiety or depression, pain thoracic. , and loss of smell or taste.
Currently, there is no internationally recognized treatment route for the disease.
Apheresis involves inserting needles into each arm and passing the blood through a filter, separating the red blood cells from the plasma. The plasma is filtered before being recombined with the red blood cells and returned to the body via another vein.
The survey includes details of people who have tried the treatment, such as Gitte Boumeester, a trainee psychiatrist in Almelo, the Netherlands, who after catching the virus developed severe, long-lasting symptoms. She was forced out of her job in November 2021, after two failed attempts to return to work.
Boumeester learned about apheresis “blood washing” treatment from a Facebook group for long covid patients.
After visiting the Long Covid Center in Cyprus to receive the treatment, at a cost of more than €50,000 (£42,376), she returned home with no improvement in her symptoms. She received six cycles of apheresis, as well as nine cycles of hyperbaric oxygen therapy and an intravenous infusion of vitamins at the private clinic Poseidonia, next to the Centre.
Boumeester was asked to sign a consent form at the Long Covid Center before undergoing apheresis, which lawyers and clinicians said was inadequate.
She was also advised to buy hydroxychloroquine as an early treatment in case she is re-infected with covid-19, despite a Cochrane review published in March 2021 concluding that the drug is ‘unlikely’ to have any benefit in the prevention of covid-19.
Marcus Klotz, co-founder of the Long Covid Center, told the BMJ: “As a clinic, we do not advertise or promote. We accept patients who have microcirculation problems and wish to be treated with HELP apheresis… If a patient needs a prescription, this is assessed individually by our doctor or the patient is referred to other specialist doctors if necessary.
A spokesperson for the Poseidonia Clinic said that all treatments offered are “always based on medical and clinical evaluation by our physicians and our clinical nutritionist, diagnosis via blood tests with laboratory follow-ups in accordance with good medical practice” .
While some doctors and researchers believe that apheresis and anticoagulant drugs may be promising treatments for long covid, others worry that desperate patients are spending life-altering sums on invasive, unproven treatments.
Shamil Haroon, clinical lecturer in primary care at the University of Birmingham and researcher on the Therapies for Long Covid in Non-hospitalized patients (TLC) trial, believes such ‘experimental’ treatment should only be carried out in as part of a clinical trial.
“It’s no surprise that people who used to function very well, who are now impaired, can’t work, can’t support themselves financially, seek treatment elsewhere,” he says.
“It’s a completely rational response to a situation like this. But people could potentially go bankrupt by accessing these treatments, for which there is no evidence of effectiveness.
In February last year, internal medicine physician Dr Beate Jaeger began treating long covid patients with apheresis at her clinic in Mulheim, Germany, after reading reports that covid was causing health problems. blood clotting. She told the BMJ that she has now treated thousands of people at her clinic, with success stories spreading on social media and by word of mouth.
Jaeger admits the treatment has been experimental for a long time, but said trials are taking too long when the pandemic has left patients desperately sick.
The North Rhine Medical Association, which examines whether doctors have breached their professional code of conduct, told the BMJ it had not received any complaints about Jaeger or his clinic from patients or other organisations. , but that she would investigate if that was the case.
The survey also revealed that apheresis and the associated travel costs are so expensive that patients create fundraising pages on websites like GoFundMe to raise money.
Chris Witham, a 45-year-old businessman and long-time covid sufferer from Bournemouth who spent around £7,000 on apheresis treatment (including travel and accommodation costs) in Kempten, Germany, l ‘ last year, said: ‘I would have sold my house and given to get better, without a second thought.
Existing research has suggested that “microclots” in the plasma of people with long covid may be responsible for long covid symptoms. But experts contacted by the BMJ and ITV News said more research was needed to understand how microclots form and whether they cause long-lasting covid symptoms.
Others also worry about the lack of follow-up of patients when they leave clinics after being prescribed blood thinners.
Robert Ariens, Professor of Vascular Biology at the University of Leeds Medical School, says: “They [microclots] maybe a biomarker for disease, but how do we know they are causative? »
He believes clinics offering apheresis and anticoagulant therapy are prematurely providing treatment based on a hypothesis that needs more scientific research.
“If we do not know the mechanisms by which microclots are formed and whether or not they are responsible for the disease, it seems premature to design a treatment to eliminate microclots, since apheresis and triple anticoagulation are not without risks, obviously one of them is bleeding,” he adds.