Long COVID and why some people are travelling abroad for treatment

Madlen Davies reports on patients with long COVID who are travelling to private clinics across Europe for blood-filtering apheresis and anticoagulation drugs

CREDIT: This is an edited version of an article that originally appeared on the BMJ

Long COVID symptoms include extreme fatigue, brain fog, heart palpitations, shortness of breath, feeling sick and chest pains. It is causing some people months of issues and difficulties returning to work, leaving them desperate for solutions. One answer for some has been to travel aboard for ‘blood-washing’ treatments. Apheresis, in which large needles are inserted into the veins and the blood is filtered, removing lipids and inflammatory proteins, is recommended by the German Society of Nephrology as a standard last resort in the country for lipid disorders and a new clinic offering apheresis for long COVID patients – called the Long COVID Center – has been opened in Cyprus. 

The BMJ has found that thousands of patients, frustrated at the lack of treatment available for long COVID in the UK, are travelling to Cyprus, Germany and Switzerland for apheresis. 

Many are also being prescribed anti-clotting drugs, including clopidogrel, apixaban and heparin, on a hypothesis that the symptoms of long COVID are caused by small clots in the blood that are blocking the flow of oxygen through capillaries. Some doctors believe these drugs may be promising treatments, others that desperation is causing patients to spend great sums on unproven treatments.

Most European countries offer experimental treatments, or off-label drugs, to patients if they believe there is a benefit and explain the risks. “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 long COVID researcher. “But people could potentially go bankrupt accessing these treatments, for which there is limited-to-no evidence of effectiveness.” 

Costs

Six rounds of apheresis can cost €1,685 a session at the Long Covid Center, and nine rounds of hyperbaric oxygen up to €150 a session. This is, of course, on top of the cost of flights and accommodation across Europe for weeks, or sometimes even months. Some patients are even setting up fundraising pages on websites such as GoFundMe to raise the money.

Chris Witham, a 45-year-old from Bournemouth, spent around £7,000 on apheresis. “I’d have sold my house and given it away to get better, without a second thought,” Chris said. 

Success stories?

Online blogs and social media are full of testimonials and research on the Apheresis Association. A Facebook group with 4,700 members, for example, promotes apheresis as a treatment for long COVID. Moderators post positive statements about apheresis as a treatment when only anecdotal evidence exists. “Over 80% of patients report to keep their gains permanently,” one post read. “There are no known risks,” said another. 

The evidence

Long COVID centres and doctors often point to research by Etheresia Pretorius, a professor in physiological sciences at Stellenbosch University in South Africa, to justify treating long COVID patients with apheresis and triple anticoagulation therapy. Pretorius published a peer-reviewed study, review articles, and preprints that hypothesise that ‘microclots’ present in the plasma of people with long COVID could be responsible for most long COVID symptoms.

Stellenbosch University has filed a provisional patent for Pretorius’s method of detecting microclots through fluorescence microscopy, and her laboratory is working on a diagnostic tool that could detect microclots and be rolled out in hospital pathology laboratories worldwide. 

However, experts comment that more research is needed to understand how microclots form and whether they are causing long COVID symptoms. “They [microclots] may be a biomarker for disease, but how do we know they are causal?” said Robert Ariens, professor of vascular biology at the University of Leeds School of Medicine. 

Ariens believes the clinics offering apheresis and anticoagulation therapy are prematurely providing treatments based on a hypothesis that needs more research.