People with long-term Covid are turning to unproven and expensive treatments due to a lack of approved therapies coupled with the need to return to paid work, experts have warned.
According to figures from the Office for National Statistics, more than 2.1million people in November were still living with Covid symptoms more than four weeks after the first confirmed or suspected infection – around 3.3% of the UK population.
However, despite a myriad of research efforts, there is still no cure beyond natural healing, which can take time, while only a fraction of people with long-term Covid have received support. services such as long-term clinics.
Among the unproven approaches that have been touted as helping or even curing Covid for a long time are supplements of various descriptions, intravenous infusions of vitamins and the use of experimental treatments such as ‘blood washing’ which are offered in some clinics at the stranger. There is often a high price.
While some patients say they have been helped by the treatments, which have not been tested with rigorous trials, experts have warned that unproven therapies can be misleading and even dangerous.
“I think some of it could be people who know what they’re doing, they know they’re exploiting. And then there may be people who think well, in fact, they believe that they are offering something [real]said Michael Zandi, neurologist and Honorary Associate Professor at University College London.
“We’ve seen a lot of people marketing products that there really isn’t any evidence and you can argue against them being completely safe.”
Professor Amitava Banerjee, also from UCL, who is leading a study into long-term Covid treatments, said an environment of distrust of experts, misinformation and regulatory issues contributed to the situation.
“There are issues in the long Covid where you have people who developed or discovered a test or ran the pharma company, going straight to social media and selling direct to consumer bypassing the evidence requirement or the demanding guidelines and saying, well, traditional routes are too slow,” he said.
But, he added, the level of research should be no different for long with Covid as with other diseases, saying everything can and should be assessed.
“I want to know that my mother or my sister or my grandmother receives something that has been tested,” he said. “I think that’s an important principle of evidence-based medicine that we have.”
Claire Higham of the charity Long Covid Support and who suffers from it herself, fears some have turned to expensive ‘brain retraining’ therapies, which they say can help by rewiring neural connections in the brain using psychological techniques.
“Name anything that medicine doesn’t handle very well and these companies come in pretty quickly,” she said. “Long Covid has arrived and has given new impetus and a breath of fresh air to these controversial treatments.”
Trevor Robbins, professor of cognitive neuroscience at the University of Cambridge, said while it’s possible brain retraining could help those with long Covid, he’s not convinced it would offer a cure, adding that it might help some but not others. “If it worked, I’m not convinced it would work any better than the standard CBT [cognitive behavioural therapy] plus mindfulness batteries,” he said.
Dr David Robert Grimes, researcher and author of The Irrational Ape, said the cause and nature of long Covid was still being uncovered, making some companies’ claims dubious.
“You have a disease that’s not clearly defined, that’s understudied, that could be multiple diseases, that could be existing diseases or a new one, we’re not really sure… That means anyone speaking with confidence of a treatment or about a cure should be treated with a big pinch of salt,” he said.
Banerjee agreed. “There are still so many things we don’t know. It cannot be true that the people offering these remedies have it all figured out. Otherwise, they would be heading for their Nobel Prize tomorrow,” he said.
Higham added that while the long-running Covid community is well-connected and able to join forces to look at possible treatments, she said the best way to protect patients is to offer support.
“There must be a huge effort to fill the black hole in medicine that created this therapeutic vacuum in the first place. We need accelerated research and a Recovery-type trial, which can test therapies quickly for a long time,” she said.
Financial aid is also crucial. “A lot of people push to try things because they have financial instability,” Higham said.
Banerjee said the long-term desire of people with Covid to try different approaches was understandable. “They want their lives back,” he said.
“The rhetoric of politics and government is that it’s over. Unfortunately, it is far from over for these individuals and this group of people who have long been affected by Covid.