Long Covid patients using unproven and expensive treatments, experts warn | Long Covid

People with long Covid are turning to unproven and expensive treatments because of a lack of approved therapies coupled with a need to return to paid work, experts have warned.

According to figures from the Office for National Statistics, more than 2.1 million people in November were still living with Covid symptoms more than four weeks after the first confirmed or suspected infection – about 3.3% of the UK population.

However, despite myriad research endeavours, there is as yet no cure beyond natural recovery, which can take time, while only a fraction of people with long Covid have received support from services such as long Covid clinics.

Among unproven approaches that have been touted as helping or even curing long Covid are supplements of various descriptions, intravenous vitamin infusions and the use of experimental treatments such as “blood washing” that are offered at some clinics abroad. Often there is a hefty price tag.

While some patients say they have been helped by the treatments, which have not been tested with rigorous trials, experts have warned unproven therapies can be misleading and even dangerous.

“I think some of it could be people who know what they’re doing, they know that they’re exploiting. And then there could be people who think well, actually, they believe that they’re offering something [real],” said Michael Zandi, a neurologist and honorary associate professor at University College London.

“We’ve seen lots of people basically marketing things of which there’s really no evidence and you can argue against them being completely safe.”

Prof Amitava Banerjee, also of UCL, who is leading a study into treatments for long Covid, said an environment of mistrust in experts, misinformation and regulatory issues have contributed to the situation.

“There are issues in long Covid where you’ve got people who developed or discovered a test or run the drug company, going directly on to social media and selling direct to consumer by sidestepping the evidence requirement or the guideline requirement and saying, well, the traditional routes are too slow,” he said.

But, he added, the standard of research should be no different for long Covid as for other diseases, saying everything can and should be evaluated.

“I want to know that my mom or my sister or my gran are being given something that’s been through the wringer,” he said. “I think that 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, is concerned that some have turned to pricey “brain retraining” therapies, which it is claimed can help by rewiring the neural connections in the brain using psychological techniques.

“Name anything that medicine doesn’t treat very well and these companies do come in quite quickly,” she said. “Long Covid came along, and gave a fresh impetus and a breath of fresh air for these controversial treatments.”

Trevor Robbins, a professor of cognitive neuroscience at the University of Cambridge, said that while it is possible brain retraining may help those with long Covid, he is not convinced it would offer a cure, adding it may help some but not others. “If it did work, I’m not convinced it would work any better than standard CBT [cognitive behavioural therapy] plus mindfulness batteries,” he said.

Dr David Robert Grimes, a researcher and author of The Irrational Ape, said the cause and nature of long Covid was still being unpicked, making the claims of some companies doubtful.

“You have an illness that is not clearly defined, that is under-researched, that could be several illnesses, that could be existing ones or a new one, we’re not actually sure … That means that anyone speaking with confidence about a treatment or about a cure should be treated with a large pinch of salt,” he said.

Banerjee agreed. “There is still so much we do not know. It can’t be the case that the people offering these cures have figured out everything. Otherwise, they’d be heading for their Nobel prize tomorrow.,” he said.

Higham added that while the long Covid community is well connected and adept at joining forces to scrutinise possible treatments, she said the best way to protect patients was to offer support.

“There has to be a huge effort to fill the black hole in medicine that created this therapeutic gap in the first place. We need fast-track research back in place and a Recovery-like trial, which can test therapeutics for long Covid quickly,” she said.

Financial help is also crucial. “A lot of people push to try things because they have financial instability,” Higham said.

Banerjee said the desire of people with long Covid to try different approaches was understandable. “They want to get their life back,” he said.

“The rhetoric from policy and the government is this is over. Unfortunately, it’s far from over for these individuals and this group of people with long Covid.”