People suffering from long Covid are being warned of the dangers of travelling abroad and undergoing unproven “blood washing” treatments.
The Department of Health and Social Care has advised patients to only take part in regulated clinical trials.
People are heading off to private clinics in Cyprus, Germany and Switzerland for blood filtering treatment and anti-clotting therapy, an investigation by the British Medical Journal (BMJ) and ITV News has uncovered.
There are risks that come with having apheresis, the blood filtering, and other treatments while there is no conclusive evidence of the benefits for long Covid sufferers, say experts.
“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 BMJ gave an example of Gitte Boumeester, a trainee psychiatrist from the Netherlands, who suffered long Covid symptoms that forced her to leave her job.
Hearing about apheresis from a Facebook group she spent over £42,000 on treatment at the Long Covid Center in Cyprus.
“I thought, what’s the worst thing I’ve got to lose?” she said. “Money was the only thing. I thought, OK, well, why not give it a try?”
But she has since returned home having spent nearly all her savings and with no improvement in her symptoms.
She was asked to sign a consent form at the Long Covid Center before undergoing apheresis, which has been described by lawyers and clinicians as insufficient, reported 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," said Marcus Klotz, co-founder of the Long Covid Centre.
Across Europe it is normal for countries to allow doctors to offer experimental treatments if they fully explain the risks involved in a consent form.
But it has been claimed that the Long Covid Center's consent process is unsatisfactory because it doesn't make clear that the treatment is experimental and patients sign away their rights to sue if they become injured as a result of the treatment.
“It’s unsurprising that people who were previously highly functioning, who are now debilitated, can’t work, and can’t financially support themselves, would seek treatments elsewhere. It’s a completely rational response to a situation like this,” said 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. “But people could potentially go bankrupt accessing these treatments, for which there is limited to no evidence of effectiveness.”
Experimental treatment should occur only in the context of a clinical trial, added Mr Haroon.
