‘Save us from Long Covid’: Woman says condition left her in burning pain
'I say to all my friends, health is very fragile, plan for this, but no one does'
01 July, 2021 — By Tom Foot
Clare Daly says more research is needed now
A WOMAN who says her life has been wrecked by “long Covid” has called on the government to urgently expand research into the condition as she warned that even a mild coronavirus infection can lead to an enduring disability.
Clare Daly, who lives in Hampstead, was managing tech start-up businesses before the pandemic but has been on sick leave for five months due to the persisting and debilitating symptoms.
Hundreds of thousands of Covid patients across the country are reporting a lasting impact which is far worse than the original “acute” infection.
Ms Daly, 38, said: “People may think Covid is not so important right now because we don’t have as many deaths. But you can still get Covid, you can still get the infection. And that means you are still at risk of long Covid.”
She added: “Having had a mild infection, I’ve now been at home for five months. In the first 12 weeks sometimes I had to spend the whole day with my head over a humidifier because I couldn’t breathe because I was so congested. My chest was burning with pain. But diagnostic tests were suggesting I’m fine. I am not one person, I am one of two million [sufferers].”
Ms Daly said she wanted to tell her story after reading that children were now getting long Covid.
It had reminded her of how, aged ten, she was diagnosed with a similar post-viral condition, Myalgic Encephalomyletis (ME).
Despite a decades-long battle with chronic fatigue and pain, she said she rarely spoke about it and had chosen to withhold it even from close friends and colleagues until today (Thursday).
Despite having a successful career and working abroad, ME has meant her life is punctuated by “crashes” – periods where she can do little else but lie in bed and cannot carry out basic tasks.
She estimates that she has spent six years of her life resting due to the illness.
Ms Daly said: “I am finding it quite triggering right now to read the stories about people at the early stages of long Covid, particularly the children.
“They have been sent into schools as a result of bad policy-making at times, and they are potentially at risk of this life-changing disability. And then they will be getting no help.”
There has been a long-standing campaign to fund proper treatment and research for ME patients.
Long Covid clinics are now being set up around the country, including at UCLH, but Ms Daly believes more should be done.
She said: “We deserve treatment, we deserve research, we deserve investment. We can beat long Covid, but we need more experimental treatments. “We have never been able to do trials before but we now we have two million people with the same infection over a two-year period. Let’s try some stuff.”
A big problem for ME patients – now also being experienced by long Covid patients – is not being believed.
“Because it is unfathomable that someone you know suddenly might not be able to wash,” said Ms Daly. “We need doctors to stop telling chronically ill women they are just anxious.”
ME and long Covid patients experience cognitive exhaustion, meaning they are not just tired but also can’t concentrate. Statutory sick pay is £96 per week, for up to 28 weeks, and Ms Daly said she was “at risk of losing my home”.
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She believes she caught the infection on a night out in December, recalling: “A few days before Boris [Johnson] announced shutting down for Christmas I had gone out as a final hurrah.”
She added: “I say to all my friends, health is very fragile, plan for this, but no one does.”
The government announced last week that two million people are believed to have or had Covid symptoms lasting at least 12 weeks, and most are women.
A day before his resignation, health secretary Matt Hancock unveiled a £50million research fund and £100m to be spent on long Covid clinics and to support GPs.
He said: “Long Covid can have a lasting and debilitating impact on the lives of those affected. We are learning more all the time.”
Professor Paul Elliott, a director at Imperial College who led the country’s biggest research study into 500,000 Covid patients, added: “Long Covid is still poorly understood but our data and others suggest it may ultimately affect millions of people in the UK alone.”