Coronavirus survivors have been left with fighting hair loss, vertigo, heart palpitations and memory problems amongst other side effects, despite first catching the disease months ago.
Thousands of people across the country and dozens in Suffolk have been left debilitated by a virus medicine cannot treat, unsupported by a government stretched by a global pandemic and not prioritised by a health service overwhelmed with critically ill patients.
Now Louise Barnes, 46, of Saxmundham, is helping to unite ‘long-tail’ coronavirus survivors who, like her, are still suffering the effects of this deadly disease through The Post Covid Syndrome Support Group on Facebook.
More than 550 people completed a survey she conducted on the social media platform, sharing their experiences of the virus that has killed hundreds of thousands around the world in the past six months.
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Many reported ongoing battles with symptoms including loss of taste and smell, vision problems, memory loss, hair loss, swollen neck glands, speech impairment, heart palpitations, dizziness and vertigo, muscle cramps, fits, stomach pain, excess gas, diarrhoea and vomiting.
Almost half of those polled thought they might die as a result of the effects.
Miss Barnes was tested back in March after falling ill with symptoms similar to coronavirus.
However, her test was void when she was taken to Ipswich Hospital, after which she was sent home to self-isolate.
Now, 14 weeks later the former geography teacher is still living with the fallout of her illness, which she is sure was Covid-19.
“It started with the typical symptoms, a dry cough and a splitting headache. After my stay at the hospital and some symptoms while I was at home I thought it was over, but in the six weeks following my test I was admitted to accident and emergency twice.
“I had diarrhoea for three weeks, I was getting confused, sometimes I would feel like I was coming out of the worst of it and the next day I would sleep for 20 hours.”
After reading some of the work from King’s College professor Tim Spector and Liverpool School of Tropical Medicine professor Paul Garner, the latter of whom contracted the virus, Miss Barnes saw in their work what she had been living with – long-tail coronavirus.
Professor Spector is one of the people working on the UK’s Covid-19 Symptom Study, which has published research to indicate that while many infected people will recover fully, some may have health problems for weeks and months to come.
Miss Barnes is writing to Health Secretary Matt Hancock and Work and Pensions Secretary Thérèse Coffey, both Suffolk MPs, to provide more support to those living with the life-changing effects of the virus.
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She added: “There is very little support out there for people living with long-tail effects because not everyone is able to prove they had Covid.
“They weren’t able to get a test when they fell ill because they were just for NHS staff and key workers, and the antibody tests are not working because it’s been too long since they were infected.
“We have some members who are losing their jobs and failing DWP assessments because they can’t prove they had Covid.”
You can find more support in the Facebook group Post Covid Syndrome Support.
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