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Case study: Bell ringer urges people to volunteer for Long Covid research

People are being encouraged to sign-up to the Help BEAT Coronavirus campaign to support research into Long Covid.

A bell ringer who is unable to ring her local church’s bells this Christmas because of the effects of long Covid is urging people to take part in research into the condition, saying “together we can find
the answers”.

Victoria Gibson, an outgoing and active member of her community before the pandemic, was struck down with Covid twice in 2020 and the long-lasting symptoms have left her “a changed person”, with an oxygen machine at home and sometimes unable to walk from the bedroom to the bathroom. Although making steady progress, she will not be able to ring the bells this festive season at her local church, where she is tower captain and in charge of ringing the bells when required by the church.

As she fights back, she is helping doctors and scientists who are researching the condition and appealing for fellow sufferers to join her. Victoria caught Covid twice in 2020 and was hospitalised on one occasion when she could hardly breathe and felt she was drowning. She developed long Covid symptoms after the second bout in October that year. She is still being treated by an NHS long Covid clinic.

She said: “I’m a changed person since I had Covid. I was a reasonably fit, confident and outgoing person who enjoyed going out and socialising with my friends. But Covid has affected me both physically and mentally. I have flashbacks, panic attacks, low moods, anxiety, as well as breathlessness and chest pains. Sometimes I’m unable to walk from the bedroom to the bathroom. I need to use the oxygen machine at home and I can’t go bellringing anymore.

“I used to love ringing the church bells, especially at Christmas, but I’m still not well enough to help this year.”

People can volunteer for the Help BEAT Coronavirus campaign by registering with Research for the Future, which is an NIHR Clinical Research Network Greater Manchester initiative working across Greater Manchester and the North West. Around 3,000 have already signed-up. Anyone over 18 in the North West who has long Covid symptoms can register. 

Victoria, who is from Chorley and works for HM Land Registry, said being involved with a research team at Salford Royal Hospital has had a positive impact on her life, putting her in touch with other patients.

She has helped by answering questionnaires and keeping a diary of her symptoms. She now wants others to get involved to help find out more about long Covid.

She said: “I’d encourage people with long Covid to sign-up to the research. Not only are you helping yourself and others, it is a great way to meet other people who have similar stories and can share advice.

“Together we can find the answers. We can’t work in isolation. I’m confident they will find something to help all long Covid sufferers. It’s the only way we can get through this.”

Many people infected by Covid-19 feel the effects for about two weeks, but others experience lingering health problems – known as long Covid. Others still have symptoms such as breathlessness, fatigue and brain fog many weeks or months later.

Thousands of people in the North West continue to struggle with the effects of long Covid and clinicians need additional people to volunteer to help them find out more about this often-debilitating condition.

Professor Nawar Bakerly, respiratory clinical lead at the Greater Manchester and Eastern Cheshire Strategic Clinical Networks, as well as respiratory consultant at the Salford Royal Hospital, is leading long Covid research in the region as part of the Help BEAT Coronavirus campaign. 

He said: “We urgently need more people who suffer from long Covid to register for our campaign and help us find out more about the condition, so we can help the thousands of people still suffering from its effects.

“For some people, long Covid is a temporary experience. For others, it is badly affecting their health and wellbeing, with some people being too sick to work or exercise.”

People can register now online at www.researchforthefuture.org/register or text RESEARCH and YOUR NAME to 81400.