A Belfast man who has battled Long Covid for two years has spent almost £20,000 travelling abroad for treatment.
Sports fanatic Ronan Boyle was super fit and regularly ran triathlons before contracting the virus in March 2020
He is now unable to take part in the activities he loves and can only work part-time - and in desperation has travelled to Germany for help.
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Ronan has had groundbreaking apheresis treatment to remove tiny blood clots, which some scientists believe could be behind Long Covid symptoms, the Mirror reports.
The UK's National Institute for Health and Care Excellence says it has no plans to introduce the treatment and claims to have seen little evidence that microclots are the cause for symptoms.
But Ronan believes the UK is dangerously lagging behind and has warned that frustrated patients are turning to the internet to find treatment as a result.
He said: "It's really really expensive, I've had 10 sessions and I've burned through nearly £20,000, but for an awful lot of people that would be completely out of the question.
"At the moment we've got people flying to Germany, and others flying to South Africa for treatment.
"We've got people trying to source medication themselves, and that's a disaster zone.
"We have 1.3 million people living in the UK with a disease that's potentially treatable, we should be shouting about that."
A study in South Africa suggested that many Long Covid patients develop microclots in their blood, which it said could be responsible for the exhaustion and breathlessness they experience.
British respiratory consultant Dr Asad Khan, another a Long Covid sufferer since 2020, has had the treatment overseas himself.
When Ronan - who had to travel in a wheelchair - was first treated in Kempten, Germany, in September, he said one of his worst symptoms - insomnia, had improved.
He returned to Germany weeks later when his condition started to regress and was given a three-month course of medication to treat clotting.
The IT consultant, whose weight dropped to under 10 stone in 2020, said Long Covid has been a struggle.
He said: "It's an awful disease, it's so brutal. I was pretty much wasting away. And we don't know what longterm damage it's doing.
"You're waiting for your life to start again, it's like your life is on hold.
"For me the first 11 months were hell. I had horrific insomnia, fatigue, I was told I needed anti-depressant medication but that didn't do a thing.
"I wasn't sleeping, I wasn't able to work. Everything is a hurdle, I had to use a wheelchair to get through the airport, there's no way I'd have been able to walk through.
"The thing that keeps me going is that I'm doing something about it and being proactive, I'll keep doing what I can."
A study led by Prof Resia Pretorius, who heads the physiological sciences department at Stellenbosch University in South Africa, found evidence that people with Covid are likely to develop tiny blood clots.
Prof Pretorius has said there is a need for more research to provide further understanding of the link between blood clotting and Long Covid.
'Long Covid has caused untold misery for thousands'
Michael MacLennan, chief executive of charity Covid:aid, said that he is aware of more people travelling abroad for microclotting treatment.
"It's something we've been aware of, especially with more publicity surrounding the work of Professor Resia Pretorius and her lab," he said.
"Long Covid has caused untold and long-lasting misery since March/April 2020 for thousands across the UK, with well over a million suffering for persistent symptoms. In the UK we need to be exploring any and all research which displays promise to alleviate those afflicted."
And he said that people suffering with the effects of Long Covid are often having their condition dismissed.
Mr MacLennan said: "At covid:aid we've consistently heard of experiences where people with very real physical experiences as a result of Long Covid have been gaslit and told it's 'in their head' – unfortunately including from medical professionals.
"More awareness and training is desperately needed so people with Long Covid can receive the treatment they need, and not experience stigma in addition to the traumas they are already experiencing."
No plans to introduce treatment in UK
The UK's National Institute for Health and Care Excellence (NICE) said it has no plans to introduce the treatment.
A spokesman said: "We are not aware of the research you mention and do not have any work in progress to update our guidance on long COVID given that the only evidence we’ve found through our ongoing surveillance is an opinion piece, which wouldn’t be sufficient for us to conduct a review of evidence in this area.
"We’ve also been unable to find anything significant on microclotting as a cause of symptoms.
"We continue to monitor the emergence of new evidence around the treatment of long COVID and regularly update our guidance to reflect this."
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