TRANSLATION Volkskrant

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Long covid patients say they recover after blood purification in foreign clinics - but no proof yet

Patients with long-term and severe complaints after a covid infection report that they have finally improved after a blood purification treatment. But scientific proof of the effect is still lacking. 'Excuse me for trying something anyway.'

Ellen de Visser 26 July 2022, 05:00

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The German internist Beate Jaeger treats the British pulmonologist Asad Khan. Jaeger initiated the advance of blood filter treatment, Khan is considered one of the success stories. Image Michael Dahlke / Funke Foto Services

She lies in a chair with an infusion in each arm, her blood flowing through a machine that filters and pumps it back in a few hours. In the small treatment room of the Long Covid Centre in Larnaca, patients from all over the world come and go. They have travelled to the town on the southeast coast of Cyprus because they are deathly ill and have pinned their hopes on a treatment whereby their blood is purified. 

Jettie Rozemond boarded the plane on 6 March. By then, the young art historian from Utrecht has been in a bad way for almost two years. An infection with the coronavirus has caused her serious, long-term problems, requiring her to lie down almost all day. At the airport, she is given a wheelchair, in the plane she wears headphones to protect her from external stimuli and she uses an inflatable footrest. Her mother accompanies her as an aid worker. She collected the 15 thousand euros for travel, accommodation and treatment through a rapid crowdfunding campaign.

When Jettie flies back almost three months later, the dark clouds have lifted a little. Previously, she suffered from terrible headaches after sitting up for fifteen minutes, but now she can stay up for four hours without pain. She gets out of the house again, walks every day, she can concentrate a little better: "We couldn't have had this long telephone conversation six months ago," she says.

General practitioner Yvonne Botman from Leiden also says that she has improved enormously after her blood was filtered. She mails from the hospital in Osnabrück where she is undergoing her seventh treatment.

For a year and a half, she has been struggling with post-covid syndrome, after contact with an infected patient. A few minutes on the treadmill and she had to recover for three days, she writes. The result of the bicycle test was so bad that the sports doctor thought it was a measuring error. Now she is experiencing a long list of improvements: she has a lower heart rate, more air, more strength in her legs, she has less nerve pain, she has sharper vision, she has saliva in her mouth again. Two days after the third treatment I put my hair in a ponytail and it felt normal, not as if I had 20 kilos hanging from my arms.

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General practitioner Yvonne Botman during an apheresis treatment in a hospital in Osnabrück. Image private

Is there finally hope for all those patients with long-term corona complaints whose lives have come to a standstill? Or do desperate patients allow themselves to be lured into paying for something, as is the case with other diseases with no cure?

Success stories on social media

The blood purification that got Jettie and Yvonne back on their feet is an existing treatment, which has been used worldwide for over thirty years for patients who have harmful substances in their blood due to a disease. For patients with inherited high cholesterol, for example, a machine can filter out fats from their blood. The therapy is called apheresis and it now appears to be a refuge for a growing group of post-covid patients. Dutch patients report that they know dozens of fellow sufferers who have travelled abroad to have it done. There are sixteen clinics, treatment centres in Cyprus, Switzerland and Germany, where internists and nephrologists (kidney specialists) offer the apheresis treatment. There are waiting lists of months.

Only: it is not at all clear whether blood purification really has an added value for the large group of patients with long-term corona complaints. Research has not been done; scientific evidence is lacking. Patients enthuse each other via the (social) media. One of the success stories comes from British lung specialist Asad Khan, who told BBC News last year that he came in in a wheelchair and walked out the door after a few treatments.

Micro blood clots

The theory behind blood purification is based on research by South African professor of physiology Resia Pretorius, who under the fluorescence microscope discovered tiny blood clots in the blood of post-covid patients. At the beginning of this year, her finding confirmed by UK research in seventy patients. These mini clots would block the capillaries and thus impede the oxygen supply to many organs and tissues. Filter those clots out of the blood, is the thought, and patients improve.

That the coronavirus causes problems with blood clotting is known: one third of all ICU patients with covid had blood clots. In the vessels of among others lungs, brain and abdomen, sometimes with fatal consequences. But that long-term complaints are caused by mini clots, so small that they cannot be traced by regular research, is a controversial theory among Dutch doctors.

We fear that these clots do not form in the patients' blood but in the lab, after the blood has been taken,' is how Maastricht professor and thrombosis expert Hugo ten Cate summarises his colleagues' criticism. Nevertheless, one of his Maastricht colleagues wants to collaborate with the South African professor to see if her research results can be reproduced.

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Blood from a healthy person (A) and from patients with post-covid syndrome (B-D). Image Biochemical Journal

Patients speak of "sticky blood" that sometimes even causes the apheresis machine to jam. They are prescribed blood thinners, which they must continue to use once they get home. Yvonne Botman is prescribed them by her German internist, Jettie Rozemond still uses one blood thinner, which she gets from her benevolent GP who saw how much she has improved.

But blood thinners increase the risk of internal bleeding, warns professor and thrombosis expert Frits Rosendaal: dangerous, he thinks, to prescribe them just like that, without checking patients. He, too, has little faith in the theory of coagulated blood. If patients are indeed full of blood clots that clog their capillaries, then they should be experiencing frequent strokes, he says.

As GPs, we have no problem at all prescribing a blood thinner for a frail elderly person with heart problems', responds Yvonne Botman, 'so prescribing a blood thinner for patients with coagulating blood is not at all exciting'. On condition, she too acknowledges, that patients are monitored.

'No money for control group'

The woman behind the rise of blood filter treatments is the German internist Beate Jaeger in Mülheim. Last year she decided to experiment free of charge with the treatment she had been giving for years to patients with too much fat in their blood in sixty patients with long-term corona complaints. It was 'extremely successful', she recently told newspapers. Meanwhile, she claims to have treated thousands of patients and fifteen other clinics are following her example.

Patients' stories matter', says thrombosis specialist Ten Cate. But it remains case histories and that is risky. Without a control group, you never know for sure what the effect of a treatment is. Apheresis is a stressful procedure that we shouldn't expose patients to lightly.

Jaeger would like to set up a large study with a control group, she says in the BMJ, but she lacks the money. It's surprising, Ten Cate thinks, because patients have to pay for the treatments themselves (1,300 euros in Germany, 1,685 in Cyprus). If you earn money, publish about your patients. Rosendaal goes further, calling it 'unethical' to offer seriously ill patients a treatment with risks attached if it has not been shown to be effective.

We are not getting anywhere here

Patients react with irritation to this criticism. So all we can do is wait on the couch,' says Jettie Rozemond. But for what? There is hardly any research into treatments. We get no further than endless questionnaires asking about our complaints. Meanwhile, I am entering my third year of illness. Excuse me for trying something. Waiting a few more years for evidence is not an option for patients, says Yvonne Botman: 'The disease is too serious for that'.

And do these clinics really make so much money out of their patients, she wonders. In the German hospital, she had two nurses at her side every time, a doctor came to see her, she had to fill in questionnaires, her blood was checked before and after the treatment and the expensive filters in the machine are also disposable.

Thrombosis specialist Hugo ten Cate understands patients' search; he knows their desperation from his own practice. He knows that Dutch doctors also sometimes prescribe anticoagulant drugs to desperate patients, although the basis for this is still very shaky, he says. We will first have to find solid evidence for the existence of mini clots in the blood. Only when we find that, can we perhaps start prescribing blood thinners in a research context.

What did I have to lose?

Gitte Boumeester has been back from Cyprus for two months now, where she underwent apheresis treatment six times. For one and a half years she has been struggling with serious complaints after a corona infection, and she had to stop her psychiatry training. I go from bed to sofa, that's what it comes down to. She spent eight weeks in a flat in Larnaca, going back and forth to the clinic in a taxi. I thought: I'll get the misery out of my blood and then I'll get better. But the treatment had no effect whatsoever, she says over the phone. I was jealous of the patients around me who I saw improving.

The whole enterprise has cost her 15 thousand euros in savings, but that is certainly not money down the drain, she says decidedly. Otherwise I would always have wondered whether this treatment would have helped me. What did I have to lose? There was nothing anyone could do for me here.

Lack of scientific evidence has not stopped her: 'Time is ticking, at the end of August I will get a WIA benefit, because the way I am now, I can't work. Just unloading the washing machine and I'm knackered.'

A huge difference in my day

Jettie Rozemond stresses that many patients make progress, but that the treatment means a complete cure for almost no one. I would say that I went from 10 per cent health to 30 per cent. That may not seem much, but it is triple, and it makes a huge difference to my day. I don't see blood thinners and apheresis as the solution, but as part of the puzzle. I still have a long way to go and am waiting for new treatments.'

Could there be a placebo effect in all these recovered patients? Would they also have recovered with a fake treatment, as a result of the natural course of their illness or by a psychological effect? The three Dutch patients are adamant. In Cyprus I saw so many people who were better,' says Gitte Boumeester. It is unthinkable that all of them would have turned out all right without treatment.

Before Jettie Rozemond travelled to Cyprus, she had tried everything from supplements to acupuncture, osteopathy and rehabilitation programmes. If I was susceptible to a placebo effect, I should have noticed it earlier. The difference between before and after is really big for me now.

General practitioner Yvonne Botman writes that she immersed herself well in the treatment and in the theory behind it. I knew: this is what I want. I finally have the feeling that something is happening, that I can work on my own recovery.