Doctors concerned that desperate patients are spending life-changing sums on invasive, unproven treatments
Thousands of people experiencing the debilitating symptoms of long covid are travelling abroad to seek costly but unproven treatments such as "blood washing", according to an investigation carried out by The BMJ and ITV News released today.
Patients are travelling to private clinics in Cyprus, Germany and Switzerland for apheresis – a blood filtering treatment normally used for patients with lipid disorders that have not responded to drugs – and anti-clotting therapy.
But experts question whether these invasive therapies should be offered without sufficient evidence.
ITV News visited a private clinic in Cyprus and spoke to 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 symptoms for at least two months after an acute covid-19 infection - a phenomenon commonly known as long covid.
According to the latest official data, as of May 1, there were nearly two million people in the UK self-reporting long covid symptoms, which can include fatigue, muscle weakness, breathing and sleep difficulties, memory problems, anxiety or depression, chest pains, and loss of smell or taste.
Currently, there is no internationally agreed treatment pathway for the condition.
Apheresis involves needles being put into each arm and the blood is passed over 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 a different vein.
The investigation 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 covid symptoms. She was forced to quit her job in November 2021, after two failed attempts to go back to work.
Boumeester learned of the "blood-washing" treatment of apheresis 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 to her symptoms. She received six rounds of apheresis, as well as nine rounds of hyperbaric oxygen therapy, and an intravenous vitamin drip at the private Poseidonia clinic, next door to the Center.
Boumeester was asked to sign a consent form at the Long Covid Center before undergoing apheresis, which lawyers and clinicians described as inadequate.
She was also advised to buy hydroxychloroquine as an early treatment package in case she was reinfected with covid-19, despite a Cochrane review published in March 2021 concluding that it is "unlikely" the drug has a benefit in the prevention of covid-19.
Marcus Klotz, co-founder of the Long Covid Center told The BMJ: "We as a clinic do neither advertise, nor promote. 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 specialised doctors where needed."
A spokesperson for the Poseidonia clinic said 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."
While some doctors and researchers believe apheresis and anticoagulation drugs may be promising treatments for long covid, others worry desperate patients are spending life-changing sums on invasive, unproven treatments.
Shamil Haroon, clinical lecturer in primary care at the University of Birmingham and a researcher on the Therapies for Long Covid in Non-hospitalised patients (TLC) trial, believes such "experimental" treatment should only be done in the context of a clinical trial.
"It's unsurprising that people who were previously highly functioning, who are now debilitated, can't work, can't financially support themselves, would seek treatments elsewhere," he says.
"It's a completely rational response to a situation like this. But people could potentially go bankrupt accessing these treatments, for which there is limited to no evidence of effectiveness."
In February of last year, Dr Beate Jaeger, an internal medicine doctor, began treating long covid patients with apheresis at her clinic in Mulheim, Germany, after reading reports that covid causes issues with blood clotting. She told The BMJ she has now treated thousands in her clinic, with success stories spreading on social media and by word of mouth.
Jaeger accepts that the treatment is experimental for long covid, but said trials take too long when the pandemic has left patients desperately ill.
The North Rhine Medical Association, which examines whether doctors have violated their professional code of conduct, told The BMJ it has not received any complaints about Jaeger or her clinic from patients or other organisations but will investigate if it does.
The investigation also found that apheresis and associated travel costs are so expensive that patients are setting up fundraising pages on websites like GoFundMe in order to raise the money.
Chris Witham, a 45-year-old businessman and long covid sufferer from Bournemouth who spent around £7,000 on apheresis treatment (including travel and accommodation costs) in Kempten, Germany, last year, says: "I'd have sold my house and given it away to get better, without a second thought."
Existing research has suggested that "microclots" present in the plasma of people with long covid could be responsible for long covid symptoms. But experts contacted by The BMJ and ITV News said more research is needed to understand how microclots form and whether they are causing long covid symptoms.
Others are also concerned about the lack of follow up care for patients when they leave clinics after being prescribed anticoagulation drugs.
Robert Ariens, professor of vascular biology at the University of Leeds School of Medicine, says: "They [microclots] may be a biomarker for disease, but how do we know they are causal?"
He believes the clinics offering apheresis and anticoagulation therapy are prematurely providing treatment based on a hypothesis that needs more scientific research.
"If we don't know the mechanisms by which the microclots form and whether or not they are causative of disease, it seems premature to design a treatment to take the microclots away, as both apheresis and triple anticoagulation are not without risks, the obvious one being bleeding," he adds.
