Are you aware of a new treatment called apheresis that is being given to people with Long Covid? It is supposed to remove small blood clots that are involved in causing Long Covid. Some of the overseas clinics that are treating people with Long Covid are also offering apheresis to people with ME/CFS and I know of several people who have travelled abroad to have apheresis – with mixed results. So why isn’t apheresis also being made available to people with ME/CFS here in the UK?
We are aware of this treatment and that small blood clots (micro-clots) may be one of several problems that are causing Long Covid. We have covered the use of apheresis on the MEA website blog on several occasions and I am following the research that is being undertaken to look at both blood clotting abnormalities in Long Covid and the use of apheresis.
Apheresis is an invasive procedure that involves removing blood from a vein, passing it through a machine that separates out any harmful constituents – in this case the small blood clots – and then returns the remaining cleansed blood to the body. However, I am not convinced that blood clots – either small/micro or large/macro – are playing a key role in the causation of ME/CFS. Neither am I convinced that in our current state of knowledge people with ME/CFS need to be treated with either anti-clotting drugs or invasive procedures such as apheresis in expensive private clinics outside of the UK.
If people with ME/CFS were forming either small or large blood clots we would be seeing clinical evidence of this in the form of transient ischaemic attacks (mini strokes), deep vein thrombosis in the legs or arms or pulmonary emboli (broken off clots entering the lungs). Having dealt with thousands of people with ME/CFS over 40 years I don’t have any significant patient evidence to indicate that thrombotic (blood clotting) events of any description are more common in people with ME/CFS, and there is no supporting research evidence. If there were such evidence we would obviously have to look at treating ME/CFS with anti-thrombotic drugs.
What needs to be done by the private clinics who are promoting apheresis as a speculative treatment for Long Covid (and ME/CFS) is to organise a properly organised clinical trial to assess both efficacy and safety. If it does turn out that there is good evidence of clotting and that apheresis is a safe and effective treatment for Long Covid, then the MEA Ramsay Research Fund would certainly be willing to consider funding a trial in ME/CFS.
- BBC Report: A new treatment for Long Covid? | October 2021
- The Guardian: Possible link between blood clots and Covid symptoms investigated | June 2022
- MEA Statement & British Medical Journal (BMJ): Long covid patients travel abroad for expensive and experimental “blood washing” | July 2022
- Nature: Could tiny blood clots cause long COVID’s puzzling symptoms? | August 2022
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.