London - Thousands of people experiencing the debilitating symptoms of long Covid are paying more than R850 000 for unproven treatments such as "blood washing", according to an investigation carried out by The BMJ and ITV News released on Wednesday.
Researchers found that such patients were 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.
However, these invasive therapies are being offered without sufficient evidence, the report said.
The World Health Organization (WHO) has estimated that between 10 percent and 20 percent of patients suffer symptoms for at least two months after an acute Covid-19 infection - a phenomenon commonly known as long Covid. 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.
ITV News spoke to Gitte Boumeester, a trainee psychiatrist from the Netherlands, who was forced to quit her job due to long Covid symptoms. Boumeester learned of the "blood-washing" treatment of apheresis from a Facebook group for long Covid patients.
She underwent the treatment at The Long Covid Centre in Cyprus at a cost of more than 42 376 pounds (about R850 000) but 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 private Poseidonia clinic next door to the Centre.
Boumeester was also asked to sign a consent form at the long Covid centre before undergoing apheresis, which lawyers and clinicians described as inadequate, the report said.
Further, she was also advised to buy hydroxychloroquine as an early treatment package in case she was reinfected with Covid.
"We, as a clinic, do neither advertise, nor promote. We accept patients that have microcirculation issues and want to be treated with help apheresisaIf a patient needs a prescription, it is individually assessed by our doctor or the patient is referred to other specialised doctors where needed," Marcus Klotz, co-founder of the Long Covid Centre told The BMJ.
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.
According to Shamil Haroon, clinical lecturer in primary care at the University of Birmingham, 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."
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 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.