Thousands of people with long Covid are traveling abroad to spend huge sums of money on unproven treatments such as “blood washing”, prompting warnings from experts and doctors.
Patients are attending private clinics in Cyprus, Germany and Switzerland for procedures such as a blood filtering treatment and anti-clotting therapy, according to an investigation by the British Medical Journal and ITV News.
However, experts have raised concerns over whether such invasive and expensive therapies should be offered without sufficient evidence.
“I am worried these patients have been offered therapies which have not been assessed by modern scientific methods – well-designed clinical trials,” said Beverley Hunt, medical director of the charity Thrombosis UK. “In this situation, the treatment may or may not benefit them but, worryingly, also has the risk of harm.”
The World Health Organization (WHO) estimates between 10% and 20% of people experience symptoms for at least two months after an acute Covid infection.
In the UK, long Covid is defined by the National Institute for Health and Care Excellence (Nice) guidelines as having new or ongoing symptoms four weeks or more after the start of the disease.
The Office for National Statistics estimates the number of people with long Covid increased from 1.3 million in January this year to 2 million in May.
Symptoms can include fatigue, shortness of breath, loss of concentration and joint pain. As well as affecting day-to-day activities, the condition can be severely limiting for some people.
Researchers, health experts and clinicians are scrambling to investigate possible treatments for long Covid, but because the condition is still novel, there is no internationally-agreed treatment pathway.
Apheresis, a blood filtering treatment normally used for lipid disorders, involves needles being put into each arm and the blood passing over a filter, separating red blood cells from the plasma. The plasma is then recombined with red blood cells and returned to the body via a different vein.
Gitte Boumeester, a trainee psychiatrist in Almelo, the Netherlands, tried it after developing severe long Covid symptoms.
After undergoing treatment at The Long Covid Center in Cyprus 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 Poseidonia clinic next door to the clinic.
Boumeester was also advised to buy hydroxychloroquine as an early treatment package in case she was reinfected with Covid, despite a Cochrane review concluding that it is “unlikely” the drug has any benefit in the prevention of the disease.
Dr Beate Jaeger, an internal medicine doctor, began treating long Covid patients with apheresis in February last year at her clinic in Mülheim, Germany, after reading reports that Covid causes issues with blood clotting. She told the BMJ she has now treated thousands in her clinic after patients shared their stories on social media and via word of mouth.
Jaeger accepts that the treatment is experimental for long Covid, but said trials are taking too long when the pandemic has left millions of patients with the condition worldwide.
Chris Witham, a 45-year-old long Covid patient from Bournemouth, England, spent about £7,000 on apheresis treatment (including travel and accommodation costs) in Kempten, Germany, last year. “I’d have sold my house and given it away to get better, without a second thought,” he said. The treatment did not improve his long Covid symptoms, the BMJ reported.
While some doctors and researchers believe apheresis and anticoagulation drugs may be promising treatments for long Covid, others worry patients becoming increasingly desperate 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-hospitalized 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 said.
“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.”
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 specialized 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.”