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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 visiting private clinics in Cyprus, Germany and Switzerland for procedures including blood filter treatment and anticoagulant therapy, according to research by the British Medical Journal and ITV News.
However, experts have raised concerns about whether such invasive and expensive therapies should be offered without sufficient evidence.
“I am concerned that these patients have been offered therapies that have not been evaluated using modern scientific methods – well-designed clinical trials,” said Beverley Hunt, medical director of the charity Thrombosis UK. “In this situation, treatment may or may not benefit them, but worryingly, it also carries the risk of harm.”
The World Health Organization (WHO) estimates that between 10% and 20% of people have symptoms 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 four weeks or more after onset of the disease with new or persistent symptoms.
The Office for National Statistics estimates the number of people with long Covid rose to 2 million in May this year from 1.3 million in January.
Symptoms can include fatigue, shortness of breath, loss of concentration and joint pain. In addition to interfering with everyday activities, the condition can be severely disabling for some people.
Researchers, health experts and clinicians are scrambling to explore possible treatments for long Covid, but as the condition is still new there is no internationally agreed treatment pathway.
In apheresis, a blood-filtering treatment usually used for lipid disorders, needles are inserted into each arm and the blood is passed through a filter, separating red blood cells from plasma. The plasma is then recombined with red blood cells and returned to the body through another vein.
Gitte Boumeester, a trainee psychiatrist in Almelo, The Netherlands, tried it after long developing severe 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 in 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 to the clinic.
Boumeester was also advised to buy hydroxychloroquine as an early treatment package should she contract Covid again, although a Cochrane review concluded it was “unlikely” that the drug would have any benefit in preventing the disease.
dr Beate Jaeger, a doctor in internal medicine, began treating long Covid patients with apheresis at her clinic in Mülheim, Germany, in February last year after reading reports that Covid was causing problems with blood clotting. She told the BMJ she has now treated thousands at her clinic after patients shared their stories on social media and through word of mouth.
Jaeger accepts the treatment for long Covid is experimental, but said studies are taking too long when the pandemic has left millions of patients with the disease worldwide.
Chris Witham, a 45-year-old long-term Covid patient from Bournemouth, England, spent around £7,000 on an apheresis treatment (including travel and accommodation costs) in Kempten, Germany last year. “I would have sold my house and given it away to get better without thinking about it,” he said. The treatment did not improve his long Covid symptoms, the BMJ reported.
While some doctors and researchers believe apheresis and anticoagulants could be promising treatments for long Covid, others fear increasingly 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 in the Therapies for Long Covid in Non-Hospitalized Patients (TLC) study, believes that such an “experimental” treatment should only be used as part of a clinical trial should be carried out.
“Not surprisingly, people who were previously highly functional are now debilitated, unable to work, unable to support themselves financially and seek treatment elsewhere,” he said.
“It’s a perfectly rational response to a situation like this. But people could potentially go bankrupt by resorting to these treatments, which have limited or no evidence of effectiveness.”
Marcus Klotz, co-founder of the Long Covid Center, told The BMJ: “We as a clinic do not advertise or promote. We accept patients who have problems with microcirculation and want to be treated with HELP apheresis … If a patient needs a prescription, it will be assessed individually by our doctor or the patient will be referred to other specialized doctors if necessary.”
A spokesman for the Poseidonia Clinic said that all treatments offered are “always based on medical and clinical evaluation by our doctors and clinical nutritionists, diagnosis through blood tests with laboratory follow-up according to good medical practice”.
