Yesterday, the BMJ reported on the experimental treatment apheresis (a technique by which a particular substance or component is removed from the blood, the main volume being returned to the body) and anticoagulation drugs that UK patients with Long Covid are paying for in Europe.
“Thousands of patients like Boumeester, frustrated at the lack of treatment available for long covid, are travelling to Cyprus, Germany, and Switzerland for apheresis, an investigation by The BMJ and ITV News can reveal.
Many are also prescribed anticlotting 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. Although some doctors and researchers believe that apheresis and anticoagulation drugs may be promising treatments for long covid, others worry that desperate patients are spending life changing sums on invasive, unproved treatments.”
But experts contacted by The BMJ said 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. He believes the clinics offering apheresis and anticoagulation therapy are prematurely providing treatment that is based on a hypothesis that needs more scientific research.
“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,” he continued.
There is as yet no published and peer reviewed evidence showing that apheresis and anticoagulation therapy reduce the microclots. “As we don’t know how they form, we cannot tell if this treatment will stop microclots from recurring.Professor Robert Ariens, University of Leeds School of Medicine.
The Guardian also reported on this story with an article called ‘Thousands seeking unproven long Covid blood treatments abroad'
The MEA statement on Apheresis
We have covered the research into micro-clots in Long Covid, and the use of apheresis (“blood washing”) as a possible form of treatment for Long Covid, on the MEA website, and here on MEA Facebook, on many occasions over the past few months
I am carefully following all this research and the trials of apheresis that are taking place
In our current state of knowledge apheresis has to be regarded as an expensive and highly speculative form of treatment for both Long Covid and ME/CFS
Consequently, it is not available here in the UK as an NHS treatment for either Long Covid or ME/CFS
So people have to travel abroad at considerable expense to be treated with apheresis
Until we have sound evidence from more than one properly conducted clinical trial to indicate that apheresis is a safe and effective treatment for Long Covid (or ME/CFS) this is not something that we can recommend for either Long Covid or ME/CFS
Dr Charles Shepherd
Trustee and Honorary Medical Adviser
(Member of The NICE Guideline Committee on ME/CFS (2019 – 2021) and The DHSC Research Working Group (2022-23)