For many long-term Covid sufferers, proving they are sick is part of the battle

Monique Jackson, left, and Lyth Hishmeh, contracted Covid-19 in March 2020. As of April 2021, they are both suffering from some symptoms of long Covid.

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Another Londoner, Monique Jackson, has lost count of the number of times her pain has been described as “just anxiety”. Medical professionals have repeatedly told the 32-year-old illustrator to go to accidents and emergencies, only to be released soon after. “I felt like I was wasting people’s time, that people didn’t believe me… or those who were sympathetic and supportive said ‘we don’t know, this is a new disease and we just don’t know. ,’ ” she said.

Learning that they weren’t alone, that other people were having the same issues, was a huge eye-opener for Hishmeh and Jackson. It wasn’t just in their head. They couldn’t imagine the pain. They were really sick.

A separate study published last month showed that seven in 10 people who had been hospitalized for Covid-19 did not fully recover five months after discharge.

Although the numbers grabbed the headlines, they did not surprise those who suffer from long-term Covid and their doctors.

About 10% suffer in the long term

Dr Manoj Sivan, clinical associate professor and consultant at the University of Leeds, was one of the first doctors to start writing about Covid long haul last spring. As an expert in rehabilitation medicine, he knew that the previous outbreaks of SARS and MERS had left some patients with post-viral syndromes long after the outbreaks were declared over. He saw the same patterns with the coronavirus.

“Anyone recovering from Covid should have a good recovery, a full recovery, within four to six weeks,” he said. “In about 10% to 20% of people, symptoms may persist beyond the period of four to six weeks, and in about 10% of people, symptoms may persist even beyond 12 weeks, when it becomes a real problem. “

Sivan said that while symptoms may vary from patient to patient, some appear to be very common. “I would say the big five are fatigue, shortness of breath, pain, brain fog, and psychological issues,” he continued.

Many patients also have symptoms associated with dysautonomia, which is caused by an imbalance in the autonomic nervous system and which can include palpitations, dizziness, and psychological issues such as anxiety, depression and PTSD, Sivan added. . Some people have had rashes and swelling in the joints and others have developed new allergies.

The large number of different symptoms makes the long Covid a particularly worrying public health problem.

“When you look at chronic pain, or, say, hypertension or diabetes, these are big problems, they are prevalent in the population and they are expensive, however, there is a very simple way to manage them – you go. at the GP, you have high blood pressure, you take drug A, if that doesn’t work, they add drug B, so there is a protocol, there are clinics and only one clinician can handle it. ”

Monique Jackson, left, and Lyth Hishmeh, contracted Covid-19 in March 2020. As of April 2021, they are both suffering from some symptoms of long Covid.

This is not the case with Long Covid, he says. “You need a full set of professionals, a multidisciplinary team, which is very expensive, and it’s very difficult to set up and manage,” he said.

The National Health Service (NHS) in England has set up around 70 long Covid clinics. But the demand is much higher than the number of places available. Monique Jackson said that although she was fortunate enough to find doctors who were helpful and understanding, she was unable to enter these types of clinics.

Her recovery has been “top to bottom”, with new symptoms appearing every few months. “Headache, shortness of breath, I had weird things like blue fingers, and the right side of my face felt like it was falling and it was still different from the left side, I had nervous sensations in everything my body like hair. dragged across the surface of my skin, ”she said. Jackson fell so ill that she had to move in with her family. She spent the summer wearing a lot of sweaters, unable to shake the chills. Chest pain and sleeplessness kept her awake for months. “It wasn’t just fatigue, it was like I forgot how to sleep. I only had one or two hours a night, ”she says.

Her symptoms were so bizarre and overwhelming that she continued to search online to see if anyone else had reported them. When she couldn’t find much, she began to share her experiences in an online visual journal. Gradually, she began to meet other patients and support groups on social media.

Dr Nisreen Alwan, associate professor of public health at the University of Southampton, said mobilizing long-term patients with Covid via social media has helped accelerate recognition of the disease as a serious problem.

“We’re definitely in a better place now, because more people know it, more doctors and medical professionals know it, but it’s important to say that there is still a lot of variation in the number of people recognized. and whether they are believed or not, because we don’t have a universal standard definition of how long Covid lasts, ”she said.

“And it also depends on who you are,” she added. “We also know from the past and from other diseases that there are groups that we believe less – women, people from ethnic minorities, people from more disadvantaged backgrounds – there is a risk that it will still be. immediately attributed to psychological presentation, such as anxiety. ”

This long haul Covid is afraid to take a shower a year after her infection because of the amount of hair she has lostThis long haul Covid is afraid to take a shower a year after her infection because of the amount of hair she has lost

Hishmeh and Jackson are both active in patient support groups. Jackson spoke to experts and posted resources on his blog. Hishmeh co-founded Long Covid SOS, an advocacy group that campaigns on behalf of patients to gain greater recognition for the disease, more research on it, and more support for those who suffer from it.

Jackson said she turned the corner about 10 months after falling ill. Although she still hasn’t come to herself, she feels better. She also said her symptoms calmed down noticeably after receiving the Covid-19 vaccine. While experts are not yet certain of the science on why this might be happening or how long the improvement in patients could last, other long-haul Coviders have also reported relief after being vaccinated.

Second pandemic

More than 133 million people around the world have been infected with coronavirus. While it is not known how many of them suffer from long-lasting Covid, public health experts are warning of a ‘second pandemic’ of long-haul illness.

“The scale is huge,” said Dr Clare Rayner, a retired occupational physician and herself a long-time Covid patient. “And the UK is wealthy compared to most countries, we’re supposed to have systems in place and if we struggle the implications for worse off and developing countries are huge, I don’t even think that is recorded. , we don’t know how many people have it. ”

A study published earlier this week showed that up to one in three people infected with Covid-19 have longer-term mental health or neurological symptoms.

Rayner said it is this aspect of the long Covid that could be of particular concern, as it impacts people’s ability to return to work. She said many long-term Covid patients experience cognitive difficulties such as memory problems, difficulty speaking, the ability to concentrate, read or plan their day.

“We have a lot of people who have been sick for a year, they are young people, mainly of working age, most of them seem to be perfectly healthy before and suddenly they can no longer work,” she said. “Even though they are improving, what we’re seeing is that people have relapses, they come back, they want to go back and then the effort, whether it’s from the brain or the body can seem to trigger a relapse, ”she said.

Hishmeh is one of the kids Rayner talks about. Now 27 years old and one year after his first infection, he is still unable to return to work. Before he fell ill, Hishmeh was a software engineer, researching artificial intelligence and “thinking a lot.” He wants to resume his career – but can’t.

“I’m 27, these are my best golden years and my brain can’t function at this level anymore, I’m exhausting myself, I’m getting tired, my eyes are getting tired,” he says.

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