People with long Covid are turning to expensive treatments due to a lack of approved therapies and a need to return to paid work.
More than 2.1 million people were living with Covid symptoms more than four weeks after the first confirmed or suspected infections in November, according to the Office for National Statistics.
There is no cure beyond natural recovery and only a fraction of people with long Covid have received support from long Covid clinics.
Blood washing is one of the experimental treatments that are offered at some clinics abroad. There is a big price tag.
Some patients say they have been helped by the treatments which have not been tested with rigorous trials.
Some of it might be people who know what they're doing. Michael Zandi, a neurologist and associate professor at University College London, said that there could be people who think that they are offering something.
There are a lot of people who market things that have no evidence and you can argue against them being safe.
An environment of distrust in experts, misinformation and regulatory issues have contributed to the situation according to Prof. Amitava Banerjee, who is leading a study into treatments for Covid.
There are issues in long Covid where people who developed a test or run a drug company, go directly on to social media and sell directly to consumers, and say that the traditional routes are too slow.
He said that the standard of research should be the same for Covid as for other diseases.
He wants to know if his mom or sister is getting something that has been through a lot. That is an important principle of evidence based medicine.
According to the charity Long Covid Support, some people have turned to pricey brain retraining therapies, which are said to help by rewiring the neural connections in the brain.
She said that companies come in quickly if medicine doesn't work. Long Covid gave a fresh boost to the controversial treatments.
According to a professor of cognitive neuroscience at the University of Cambridge, brain retraining may help those with long Covid, but he doesn't think it's a cure. He doesn't think it would work any better than standard cognitive behavioural therapy.
The author of The Irrational Ape said that the cause and nature of long Covid was still unknown, making the claims of some companies questionable.
The person agreed. We don't know a lot of things. The people who are offering these cures have no idea what they are doing. They would be going for the prize tomorrow.
She said the best way to protect patients was to offer support.
The therapeutic gap was created by the black hole in medicine that needed to be filled. She said that we need fast-track research back in place and a Recovery-like trial.
It is important that financial help is given. A lot of people want to try things because of financial problems.
People with long Covid want to try different approaches. He said that they wanted to get their life back.
This is over because of the rhetoric from policy. The group of people with long Covid are not done.
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