Long Covid: 'I'm a shell of my former self' says young woman among 60,000 living with syndrome

• Video report by ITV Wales reporter Jess Main

More than 60,000 people in Wales are thought to be living with Long Covid, according to figures from the Office for National Statistics.

The official term is 'post-Covid-19 syndrome', which is defined as signs and symptoms that develop during or after an infection of Covid-19, continue for more than 12 weeks, and are not explained by an alternative diagnosis.

The symptoms can be different for each person, ranging from breathlessness and brain fog, to chronic fatigue and changes to taste and smell.

Helen Marchant, 26, tested positive for Covid-19 in July 2021. Six months on she says she’s a shell of her former self.

"I previously really enjoyed mountain walking, running, I was very active, and I do feel like I’ve lost six months of my life, it’s changed it completely," she said.

Helen, who lives near Caernarfon, says living with Long Covid has taken its toll mentally as well as physically.

She said: "It’s quite hard to come to terms with the fact that actually you can’t see friends, because you don’t have the energy to. You can’t really easily walk down the end of the road, never mind up a mountain as you were."

Helen, who is part of a Long Covid group on social media, says the lack of support in Wales has been upsetting.

She said: "I think the issue is even those people who have been able to access services, the focus on it is on rehabilitation and symptom management.

"But for a lot of us, we feel that we need further medical investigations, we need treatable pathology, we need access to research opportunities to find out what’s going on."

The million dollar question - whether Long Covid is something that can be cured, or something patients like Helen will have to learn to live with - is impossible to answer just yet.

Nicola Perry-Gower is pulmonary rehabilitation clinical lead at Swansea Bay University Health Board. The board runs a Long Covid rehabilitation service from the city’s Bay Field Hospital.

She said: "We don’t really know the answer to that question yet, we’re still waiting on a lot of the research out there, this is still really new.

"One of the best quotes I’ve ever heard is that we’re flying the plane while we’re still building it, it’s massive in that sense, and we’re still waiting on all the evidence.

"We are hoping that in 12 to 24 months we will see a massive change in a patient’s condition with Long Covid, but certainly at the moment the jury is out on that one."

The Welsh Government says a review of its Long Covid programme has found it is working to help treat and manage patients’ symptoms.

Its £5m Adferiad (Recovery) programme was launched last summer and aims to provide rehabilitation services for people with Long Covid and referrals to specialist care services, where needed, through local health boards.

The government's review found more than 2,000 people had accessed services, and more than 70% rated their experience above average.

Speaking at a press conference on Tuesday (February 8), Health Minister Eluned Morgan said that whilst the public health situation in Wales is stabilising, there are thousands of people who are still suffering from the long-term effects of the virus.

She said: "We don’t know what impact the recent Omicron wave, which caused a huge surge in infections across Wales, will have on the number of people with Long Covid."

The Adferiad programme has had its first six monthly review and shows that just over 2,400 people have been diagnosed with Long Covid by their GP or healthcare professional.

Of these, 2,226 have used the Long Covid rehabilitation services in the last year.

Only 3.5% were referred to secondary care services – the vast majority were treated by primary care professionals, such as GPs, psychologists, occupational therapists and physiotherapists.

Ms Morgan added: "Our services are now in place and I want to reassure those experiencing ongoing symptoms or struggling today that we are working hard to help them.

"If you are still suffering from Long Covid symptoms and these are affecting your quality of life, please contact your GP.

"In Wales, we are seeing very small numbers of children affected by Long Covid at present and health boards are treating them on a local basis in accordance with their specific needs.

"We are still learning about long-Covid and the expert group and the Adferiad review, which includes people’s feedback and experiences, will help us to improve services further."