Chronic covid patients travel abroad seeking unproven “blood washing” treatment

Thousands of people experiencing debilitating chronic covid symptoms travel abroad to seek expensive but unproven treatments such as “blood washing”, according to an investigation conducted by The BMJ and ITV News that released today.

Patients travel to private clinics in Cyprus, Germany and Switzerland for apheresis – a blood filtering treatment commonly used for patients with lipid disorders who do not respond to medications – and anti -clotting therapy .

But experts are questioning whether these invasive therapies should be offered without sufficient evidence.

ITV News visited a private clinic in Cyprus and spoke with its co-founder Marcus Klotz and several patients. The full report by ITV News Science Editor Deborah Cohen will air on 13/07/2022 on ITV Evening News at 6.30pm and ITV News at Ten.

To access report clips along with case studies and footage of the Cyprus clinic please contact: [email protected]

The World Health Organization (WHO) estimates that between 10% and 20% of patients experience symptoms at least two months after chronic covid -19 infection – a phenomenon commonly known as long covid.

According to the latest official data, as of May 1, there were nearly two million people in the UK who self-reported chronic covid symptoms, which could include fatigue, muscle weakness, difficulty breathing and sleeping, memory problems. , anxiety or depression, chest pain, and loss of smell or taste.

Currently, there is no internationally agreed treatment method for the condition.

Apheresis involves needles being placed in each arm and the blood is passed through a filter, which separates the red blood cells from the plasma. Plasma is filtered before being recombined with red blood cells and returned to the body through another vein.

The investigation included details of people who tried treatment, such as Gitte Boumeester, a trainee psychiatrist in Almelo, Netherlands, who, after being infected with the virus, had severe chronic covid symptoms. He was forced to quit his job in November 2021, after two failed attempts to return to work.

Boumeester found out the “blood washing” apheresis treatment from a Facebook group for longtime covid patients.

After visiting The Long Covid Center in Cyprus to receive treatment, at a cost of more than € 50,000 (£ 42,376), he returned home without a change in his symptoms. She received six rounds of apheresis, as well as nine rounds of hyperbaric oxygen therapy, and an intravenous vitamin drip at Poseidonia’s private clinic, next to the Center.

Boumeester was asked to sign a consent form at the Long Covid Center before undergoing apheresis, which lawyers and clinicians described as inadequate.

He was also advised to buy hydroxychloroquine as an early treatment package in case he could reinfect covid-19, despite a Cochrane review published in March 2021 concluding that it was “likely” that the drug had a beneficial effect. prevention of covid-19.

Marcus Klotz, co-founder of the Long Covid Center told The BMJ: “We as a clinic do not advertise, nor promote. We accept patients who 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 specialized doctors where 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 complications. follow up in the lab according to good medical practice. “

While some doctors and researchers believe that apheresis and anticoagulation drugs may promise treatments for chronic covid, others are concerned that desperate patients are spending life-changing amounts. in invasive, unproven treatments.

Shamil Haroon, clinical lecturer in primary care at the University of Birmingham and a researcher in Therapies for Long Covid in Non-hospitalized patients (TLC) trial, believes that such “experimental” treatment should only be done in the context of a clinical that test.

“It’s not surprising that people who were previously highly functional, who are now failing, can’t work, can’t support themselves financially, are looking for treatments elsewhere,” he said.

“It’s a perfectly reasonable response to a situation like this. But people can go bankrupt with access to these treatments, where there’s limited to no evidence of effectiveness.”

In February last year, Dr Beate Jaeger, an internal medicine doctor, began treating long covid patients with apheresis at his clinic in Mulheim, Germany, after reading reports that covid causes coagulation issues. blood. He told The BMJ that he has treated thousands at his clinic, with success stories spreading on social media and orally.

Jaeger accepted that the treatment was experimental for long covid, but said the trials were too long when the pandemic left patients severely ill.

The North Rhine Medical Association, which examines whether doctors have violated their professional code of conduct, told The BMJ that it has not received any complaints about Jaeger or his clinic from patients or other organizations. but will investigate if this has happened.

The investigation also found that apheresis and associated travel costs are so expensive that patients set up fundraising pages on websites like GoFundMe to raise money.

Chris Witham, a 45-year-old businessman and longtime covid sufferer from Bournemouth who spent approximately £ 7,000 on apheresis treatment (including travel and accommodation costs) in Kempten, Germany, last years, said: “I would have sold my house and given it to be cured, without thinking.”

Existing research has suggested that “microclots” in the plasma of people with chronic covid may be responsible for chronic covid symptoms. But experts contacted by The BMJ and ITV News said more research is needed to understand how microclots form and whether they cause chronic covid symptoms.

Others are also concerned about the lack of follow-up care for patients when they leave clinics after being prescribed anticoagulation drugs.

Robert Ariens, professor of vascular biology at the University of Leeds School of Medicine, said: “They [microclots] may be a biomarker for disease, but how do we know that they are the cause? ”

He believes that clinics that offer apheresis and anticoagulation therapy are providing early treatment based on a hypothesis that requires more scientific research.

“If we don’t know the mechanisms by which microclots are formed and whether they are caused by disease or not, it seems premature to design a treatment to remove microclots, since both apheresis and triple anticoagulation have no risks. , the obvious one is bleeding, “he added.

Source:

Journal reference:

Davies, M., (2022) Long -term covid patients travel abroad for expensive and experimental “blood washing” treatment. The BMJ. doi.org/10.1136/bmj.o1671.