Long Covid patients travelling abroad for invasive and unproven ‘blood-washing’ treatment

Thousands of people with Long Covid symptoms are spending large sums of money on invasive and unproven treatments in private clinics abroad, a new investigation has found.

The investigation, led by the British Medical Journal (BMJ) and ITV News, discovered that patients are travelling to private clinics in Cyprus, Germany and Switzerland for apheresis (also known as ‘blood-washing’) and anti-clotting therapy.

Apheresis is normally used for patients with lipid disorders that have not responded to drugs. The treatment involves needles being put into each arm; the blood is then 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.

While some doctors and researchers believe apheresis and anticoagulation drugs may be promising treatments for Long Covid, others say the treatment is experimental and should only be done in the context of a clinical trial.

“Limited to no evidence of effectiveness”

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, said: “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.

“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.”

For example, one patient from the Netherlands spent more than ‚¬15,000 (£12,675) on apheresis after she learned of the treatment from a Facebook group.

Gitte Boumeester’s Long Covid symptoms were so severe she was forced to quit her job in November 2021, after two failed attempts to go back to work.

Desperate to relieve her symptoms, Ms Boumeester visited the Long Covid Center in Cyprus where 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. She returned home with no improvement to her symptoms.

Although Ms Boumeester was asked to sign a consent form at the Long Covid Center before undergoing apheresis, lawyers and clinicians said this was not an adequate precaution.

Lack of follow up care for patients after being prescribed anticoagulation drugs

Existing research has suggested that ‘microclots’ present in the plasma of people with Long Covid could be responsible for Long Covid symptoms. But experts say 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.

While it is thought that microclots may be a biomarker for disease, Robert Ariens, professor of vascular biology at the University of Leeds School of Medicine, questions whether 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.

He said: “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.”

Professor Beverley Hunt, a blood disorder specialist and medical director of Thrombosis UK, told ITV News that apheresis also carries risk of infection and metabolic upsets, and patients may need additional magnesium and calcium.

However, Dr Beate Jaeger, an internal medicine doctor who began treating Long Covid patients with apheresis at her clinic in Germany, said we cannot wait for clinical trials when there are thousands of patients suffering with debilitating symptoms.