Post-COVID patients who can no longer be helped within regular care regularly turn to unproven and often expensive alternative treatments. “It may not harm medically, but psychologically and financially.”
Karin in her fifties got corona three times and every time she came out sicker. “Now I barely have enough energy to shower in the morning or to take a short walk with our dog. Despite all the doctor visits and all the therapies, I’m still exhausted every day.”
‘All I could do is no longer there’
“Cognitively, things are sometimes a bit less, and I have a lot of headaches. The doctors don’t know if and when I will get better.” Before she got sick, Karin had a busy job and did a lot of sports. “Skating, skating, cycling, you name it. Now I literally sink through my legs after just 20 minutes of walking.”
“If we go further afield, I will even need a wheelchair. It’s just very strange: everything I could do is no longer there.”
Treated out
Karin is currently out of treatment within regular medicine. Out of desperation, she therefore entered the alternative treatment circuit. “I’m a member of a Facebook group for post-COVID patients. Everyone there is at their wits’ end, you can read that in all the posts.”
“We all search the alternative circuit with the question: what can we do to get better again?”
Did nothing, thousands of euros poorer
Karin underwent craneosacral therapy, singing and orthomolecular therapy and she had a piercing in her ear that stimulates the large body nerve. vagus nerve to balance again.
“And I also tried laser therapy. A very nice lady spoke to my husband and me. She actually gave us a kind of guarantee: the laser would help in 80 to 100 percent of the cases. But it didn’t do anything for me We are thousands of euros poorer.”
Proliferation of alternative treatments
Aftercare organization C-support is concerned about the proliferation of alternative treatments that give post-COVID patients false hope. “We generally see patients with the most serious complaints,” says Sara Biere-Rafi, general practitioner and medical advisor at C-support.
“They have often already had several treatments and have not recovered. There are regular financial problems because people are unable to work less or at all. Out of desperation, they spend their last savings on these kinds of initiatives. I think that is a bad thing. “
‘Earning money from vulnerable people’
‘If it doesn’t benefit, it won’t hurt’ doesn’t apply here, says Biere-Rafi. “Perhaps most of those treatments are not directly harmful from a medical point of view, but they do harm financially and mentally. Money is earned here on the backs of vulnerable people with all kinds of treatments, most of which are not scientifically substantiated at all.”
‘Urban myth’
EenVandaag presented a number of alternative post-COVID treatments to internist and professor of medicine Marcel Levi. For example, laser therapy, which could be used to stimulate mitochondria, the powerhouses of the cells, among other things.
“Our cells do indeed have mitochondria, but we don’t know at all whether they are involved in any form in post-COVID complaints,” says Levi. “Secondly, I have no idea what laser could do with those mitochondria. I don’t know of any research that shows that laser has a positive influence on that. This is really a jack-of-all-trades story.”
‘If you manage to do that, it’s worth a Nobel Prize’
Another treatment touted as a therapy for post-COVID syndrome is neurofeedback, the so-called measurement and resetting of brain waves: “That is not possible at all,” says Levi. “If someone could pull that off, it would be worth a Nobel Prize.”
And an ear piercing to relax the main nerve of the body, the vagus nerve? Levi laughs: “Stop it, he’s not walking there at all.”
Revenue model
Yet the problem is serious: Levi is angry that the desperation of patients leads to a revenue model: “It concerns an estimated 100,000 patients who have long-term complaints. Those people are often in full health after a covid infection in a very bad medical and mental condition.”
“Regular treatments don’t help them. They are desperate and grab every straw that comes along. And I understand that very well.”
Mental clap
“With some of those treatments you may also get a placebo effect. Patients hope and wish so strongly that things will get better, that sometimes something actually happens.”
And that’s fine, Levi emphasizes. “But to put a fat price tag on that is really going too far. And very often nothing happens at all. Then you have lost your money, and you also get the mental blow of the disappointment that it was all useless .”
No more alternative treatments
In any case, Karin does not want to undergo alternative treatments for the time being: “My husband and I have talked about it and decided not to do it anymore. It takes so much time, money and energy, and the disappointment is so great when it doesn’t work again. “
“I’m just waiting for what’s to come. I’m hoping for new, well-designed research, in which I might be able to participate in a clinical trial.”
32 million for post-COVID research
And there is suddenly a bit of progress in the matter, says Sara Biere-Rafi of C-support: “Last week, Minister Kuipers awarded a 32 million euro subsidy to an expertise network for the post-COVID syndrome. The aim is on the one hand to provide information, thus sharing knowledge for both doctors and patients.”
“But the money is also intended for research into effective treatments. Patients can therefore also benefit from this. They can then participate in an experimental treatment, but in a controlled and safe environment.”
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2023-06-12 05:00:02
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