A great deal is currently being published about Long COVID. Consequently, maintaining an overview and separating the wheat from the chaff is not easy. Gregory Fretz (see Infobox "Background") clarifies the trends and theses for Altea. The first part of the interview looked at the causes of Long COVID. The second part examines therapeutic approaches.
Gregory Fretz, in recent weeks scientists have been discussing whether Long COVID might be attributable to the reactivation of the Epstein-Barr virus. What is your view?
The Epstein-Barr virus (EBV) is the trigger for Pfeiffer's glandular fever. A large proportion of the population has had such an infection. We know that EBV is one of the viruses that can trigger chronic fatigue syndrome (CFS). CFS shares many common features with Long COVID. Hence, the discussion about reactivated EBV is nothing new: CFS sufferers have more EBV antibodies on average than those not affected.
"EBV measurement is currently of little benefit to those affected."
But certain preparations are under discussion.
That's right. But one has been studied and it turned out to be no good. For another, we don't yet have enough data, especially in connection with Long COVID. The drug has side effects, costs CHF 1000 a month and is not reimbursed by health insurance.
I understand the frustration of those affected, who really want something done. I can understand that they want to try to do something themselves. But as a doctor, I can't simply prescribe something on the off chance if it hasn't been properly studied. Unfortunately, good initial prospects often come to nothing during drug development. Getting this difficulty across is always a challenge.
"As a doctor, I can't simply prescribe something that hasn't been properly studied."
There were reports in summer about H.E.L.P. apheresis, a dialysis procedure.
I found the approach interesting and was also in contact with the researcher. The idea is to filter autoantibodies and pro-inflammatory cytokines out of the blood. People who experienced pressure in the lungs and shortness of breath responded well in a small study group. One patient of mine, who had neurological symptoms in particular, benefited from the treatment less. Consequently, it's not the solution for everyone affected, but perhaps for a particular sub-group. We don't know how long the effect will last either.
To my knowledge, the procedure has not yet been offered in Switzerland but is being offered increasingly in Germany, with scientific monitoring. But it is also an intensive and invasive treatment. After all, dialysis is carried out in a device outside the body, which is not a trivial matter.
Research results from Erlangen are currently getting a lot of attention: They managed to cure several Long COVID patients there with an as-yet-unlicensed drug.
This sounds very plausible to me. The drug BC 007 is an antibody against autoantibodies – i.e. it eliminates proteins that attack the body. If one can find and bind these autoantibodies, as BC 007 claims to do, this could be a very promising approach.
Is that the hoped-for breakthrough?
I would still be somewhat cautious. The drug still hasn't been licensed. Clinical studies are now following. Up to now, fewer than 10 sufferers have been treated with it. Taking various forms of Long COVID into account and not treating them all the same will also be important. I suspect that the approach is highly promising for a particular type of patient but won't help everyone across the board.
Could the examination of ocular circulation be of any use for diagnosis?
This is undoubtedly fascinating for diagnosis. You can examine microcirculation in the eye, which can be impaired in Long COVID, even a long time after infection. This is how the idea arose of using BC 007, which was originally developed for patients with special heart conditions. There appears to be a connection between autoantibodies and microcirculation. However, just exactly how they are related is still unclear to me. If this correlation could be clarified, it would be extremely helpful.
What have you had positive experiences with to date?
There are various schemes for drug treatments. It's a relatively mixed picture: some people benefit from such interventions, others don't. For the time being, there's no scientifically well-founded drug therapy to treat the causes. I share this view with the specialist German associations.
We have learned a lot treating the symptoms in recent months. One example is lavender oil capsules: they are astonishingly helpful when it comes to sleep disorders. And many of those affected find the MBSR program (Mindfulness-Based Stress Reduction) helpful. Amitriptyline is also often extremely helpful for headaches. There are many other examples too.
"Lavender oil capsules are astonishingly helpful when it comes to sleep disorders."
How do you deal with the fact that you cannot offer your patients any treatment that cures the causes of Long COVID? There is of course enormous suffering.
It's a difficult area. I try to be absolutely clear: I cannot rule out that some things may help. But I'm hesitant to prescribe anything while there is insufficient evidence. What helps some hinders others. We do not actively recommend untested treatments, but we support them on request.
I understand the desire for a clear answer and a simple solution. But unfortunately, history shows that in all complex illnesses – and Long COVID is a complex illness – there's no simple solution. But we would have got wind of it here too if everyone affected had been cured in the USA, for example, or by a particular procedure. We are, however, increasingly improving our understanding, as shown by the examples discussed.
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