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An incessantly itchy rash, a heart rate of 200 beats per minute, hair loss, numb feet, aching limbs, headaches, fatigue – these are just some of the 49 health problems that Sheren Gaulbert has been battling over the last two years.
The previously healthy 46-year-old chronic pain specialist from London contracted COVID in December 2019, weeks before the pandemic was in the headlines. Now she is one of tens of thousands of people in the UK to be struggling with long COVID.
"It has been a traumatic two years and when I first found a support group online there were around 500 people in the group but now there are 46,000," she says.
"It’s a relief to know I’m not alone but it has been a difficult journey."
Sheren has no idea where she caught the virus but her first symptom was a rash behind her knees."It was very itchy and I was convinced it was bed bugs but when I asked exterminators to check the house, they found nothing. That Christmas, I developed symptoms that were milder than flu but my whole body ached. Of course, we didn’t know much about the virus or long COVID at the time so I never connected the rash and the illness together.
"I recovered but a few weeks later, my good friend went to the States and came back with another mysterious virus. He was so unwell but started to recover. However, he then suffered a stroke and died. I was in shock. We had been living together for a year and had so many plans. I was grief stricken so when other symptoms started to appear, such as a horrible headache and my eyesight deteriorating, I put it down to stress and the grief of losing him."
With no tests available so early in the pandemic, Sheren was not diagnosed with COVID at the time. Her eyesight became worse and she became so sensitive to sound and light that she had to wear ear plugs and sunglasses around her house.
"When lockdown was announced I was already struggling and a dear friend, realising that we were going to be both alone, said she would move in with me for a few weeks. She was the one who realised that my symptoms were not ‘normal’.
"She witnessed me screaming out in pain when I moved my body, she knew I’d fallen asleep during a Zoom meeting with a colleague – something I’d never do – and when we went for a walk in the park around May time I had to turn back because my feet had gone numb. I’d been telling myself that it was grief or even perimenopause. I’d sometimes wake in the night and my heartbeat would be over 200 beats per minute. My hair was falling out and I had a tingling sensation in my head. There were some nights where I felt so bad that I really did think I might die."
It was when her friend discovered an article in the British Medical Journal, listing all the symptoms that Sheren put two and two together.
"I paid privately for an antibody test but it came back negative. However, I was told that if I’d developed the virus as early as December 2019, it was to be expected that I might not have antibodies. I was also told that some people don’t have an antibody response that can be picked up by routine tests. I found a Facebook group of people with long COVID and saw plenty of people experiencing similar things. Medical professionals have since told me it has to have been COVID. It was a relief to have some kind of diagnosis but I wanted to know how long this would continue for and what I could do".
Watch: Long COVID now has an official WHO clinical definition
Sheren got involved with campaigns and research, filling out questionnaires and surveys to help scientists understand more about the long-term effects of the virus. But her conditioned worsened.
"On September 1st 2020, I ended up in A&E as my tachycardia (fast heart rate) was so bad. I was also worried that my brain had been affected as I was struggling to say full sentences. A friend even had to tell me that she didn’t understand what I was saying. I couldn’t read as words jumbled on the page and couldn’t even listen to Radio 4 because it was too much for my brain to manage."
Over the following months, Sheren realised she needed time to convalesce properly and cut down her hours to three days a week. Slowly, she began to recover but it wasn’t until August of this year that the tachycardia disappeared and she started feeling better.
"I can go on slightly longer walks but I’m still not 100 per cent better," she admits. "I’ve stopped drinking alcohol completely because even watered down Prosecco would set me back and I’d come down with flu-like symptoms again so it’s not worth it. I’m also aware that if I don’t take care of myself it might develop into ME or Chronic Fatigue Syndrome."
Sheren has now had all three of her vaccines and says it had a health boosting effect. "I had the Astra Zeneca vaccine and it gave me a real boost health wise. I felt like superwoman. It happened with my second and my booster too."
She is still involved with research – as a collaborator on the UCL Cicada study looking into the pandemic experiences of people from diverse backgrounds and has participated in research for Cambridge and Oxford universities, as well as a study by Sano Genetics, looking at the genetic predisposition for COVID and whether people like Sheren – of South Asian descent – might be more vulnerable.
"So many medical studies tend to be biased towards Caucasian men that it’s important that people such as myself come forward to take part in research," she says. "That way we can hopefully have some answers."
Sano Genetics is looking for UK adults of all ages and ethnicities to take part in its genetics of long Covid study. It aims to help researchers understand if genetics impact long COVID symptoms and recovery. You must currently have, or have recovered from, Covid-19 or long Covid. Sign up on their website to receive a free at-home DNA testing kit.
Watch: Giving children two vaccine does could prevent thousands of long COVID symptoms