For many sufferers of long Covid, proving they are sick is a big part of the battle

Lyth Hishmeh kept feeling ill months after contracting coronavirus a year ago in March. He had chest pain and couldn’t concentrate. At 26 years old, the former regular runner was fatigued and breathless, struggling to function properly. Yet medical professionals kept telling him he simply could not still be ill.

“They were telling me it’s all in my head,” he said. For Hishmeh who lives in London and many sufferers of long Covid, proving they are sick has become a big part of trying to get better.

Another Londoner, Monique Jackson, has lost count of the number of times her pain was described as ‘just anxiety.’ The 32-year old illustrator was repeatedly told by medical professionals to go to the accidents and emergency, only to be discharged soon after. “I felt like I was wasting people’s time, that people either didn’t believe me … or the ones who were sympathetic and supportive said ‘we don’t know, it’s a new disease and we just don’t know,'” she said.

Learning that they were not alone, that other people were experiencing the same issues, was a huge revelation for both Hishmeh and Jackson. This was not just in their heads. They were not imagining the pain. They really were sick.

Long Covid, also called post-Covid syndrome, is shaping up to be a major, long-term public health issue. In the UK alone, almost 700,000 people reported having symptoms for at least three months after getting infected with Covid-19, according to a survey done by the UK Office for National Statistics in March. A majority of the 700,000 said their illness was limiting their day-to-day activities and for almost 70,000, the symptoms have lasted for more than a year.

A separate study published last month showed that seven in 10 people who had been hospitalized for Covid-19 have not fully recovered five months after being discharged.

While the figures made big headlines, they did not come as a surprise to those suffering from long Covid and their doctors.

About 10% suffer long-term

Dr. Manoj Sivan, an associate clinical professor and consultant at University of Leeds, was one of the first physicians to start writing about Covid long haulers last spring. As a rehabilitation medicine expert, he knew previous epidemics of SARS and MERS left some patients suffering with post-viral syndromes a long time after the epidemics were declared to be over. He was seeing the same patterns with the coronavirus.

“Anyone who’s recovering from Covid is expected to make a good recovery, a full recovery, within four to six weeks,” he said. “In about 10% to 20% of people, the symptoms can linger beyond the four to six week period and in about 10% of people, the symptoms can persist even beyond 12 weeks, when it becomes a real problem.”

Sivan said that while symptoms can vary from patient to patient, there are some that appear to be very common. “I would say the big five are fatigue, breathlessness, pain, brain fog, and psychological problems,” he continued.

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

The vast number of different symptoms make long Covid a particularly worrying public health problem.

“When you look at chronic pain, or, let’s say, hypertension or diabetes, they are big problems, they’re prevalent in the population and they’re costly, however, there is very streamlined way of managing them — you go to the GP, you got high blood pressure, you get put on drug A, if that doesn’t work, they add drug B, so there’s a protocol, there are clinics and a single clinician can manage it.”

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

The National Health Service (NHS) in England has set up around 70 long Covid clinics. But demand is much, much higher than the number of places available. Monique Jackson said that while she has been fortunate to find doctors who were helpful and understanding, she has not been able to get into this type of clinics.

Her recovery has been “up and down,” with new symptoms popping up every few months. “Headaches, the shortness of breath, I had weird things like blue fingers, and the right side of my face felt like it dropped and it still feels different to the left side, I had the nerve sensations all throughout my body like hair was being dragged across the surface of my skin,” she said. Jackson got so ill she had to move back in with her family. She spent the summer wearing lots of jumpers, not able to shake off the chills. Chest pain and insomnia kept her awake for months. “It wasn’t just tiredness, it was like I’d forgotten how to sleep. I only got one or two hours a night,” she said.

Her symptoms were so bizarre and overwhelming, she kept searching online to see if anyone else reported them. When she couldn’t find much, she started chronicling her experiences in a visual diary online. Gradually, she started coming across other patients and support groups on social media.

Dr. Nisreen Alwan, an associate professor of public health at the University of Southampton, said the mobilization of long Covid patients through social media helped speed up the recognition of the condition as a serious problem.

“We are definitely in a better place now, because more people know about it, more doctors and healthcare professionals know about it, but it’s important to say that there’s still a lot of variation in how much people are recognized and whether they are believed or not, because we haven’t got a universal standard definition of what long Covid is,” she said.

“And it also depends on who you are,” she added. “We know also from the past and from the other illnesses that there are groups who are less believed — women, people from ethnic minorities, people who are from more deprived backgrounds — there is that risk of it still being attributed to straightaway to psychological presentation, like anxiety.”

Hishmeh and Jackson are both active in patient support groups. Jackson has been speaking to experts, posting resources on her blog. Hishmeh has co-founded Long Covid SOS, an advocacy group that campaigns on behalf of patients to get more recognition for the condition, more research into it and more support for those suffering from it.

Jackson said she’s turned the corner about 10 months after getting sick. While she is still not back to her former self, she is feeling better. She also said that her symptoms have calmed down noticeably after she got the Covid-19 vaccine. While the experts aren’t yet certain about the science on why this could be happening or how long patients’ improvement might last, other Covid longhaulers have also reported relief after getting inoculated.

Second pandemic

More than 133 million people globally have been infected with coronavirus. While it’s unclear how many are suffering from long Covid, public health experts are warning of a ‘second pandemic’ of longhauler disease.

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

A study released earlier this week has shown that as many as one in three people infected with Covid-19 have longer term mental health or neurological symptoms.

Rayner said it is this aspect of long Covid that could be particularly worrying, because it impacts people’s ability to return to work. She said many long Covid patients are experiencing cognitive difficulties like memory problems, speech difficulties, ability to concentrate, read or plan their day.

“We have an enormous amount of people who have been off sick for a year, they are young people, mainly they are of working age, most seem to have been completely healthy before and suddenly they cannot work,” she said. “Even if they get better, what we’re finding is that people have relapses, they go back, they want to go back and then exertion, either of the brain or the body can seem to trigger a relapse,” she said.

Hishmeh is one of the young people Rayner is talking about. Now 27, and a year on from his initial infection, he is still unable to return to work. Before becoming ill, Hishmeh was a software engineer, researching artificial intelligence and “doing a lot of thinking.” He wants to get back to his career — but can’t.

“I’m 27, these are my prime, golden years and my brain can’t work at that level anymore, I get exhausted, I get tired, my eyes get strained,” he said.