For many long-suffering Covid sufferers, it’s a bit of a struggle to prove they’m sick

Another Londoner, Monique Jackson, has lost the number of times her pain has been described as ‘just anxiety’. The 32-year-old illustrator was repeatedly told by medical professionals to go after the accidents and emergencies, only to be discharged afterwards. “I felt like I’m wasting people’s time, that people did not believe me … or those who were sympathetic and supportive said ‘we do not know, it’s a new disease and we just do not know’.” she said.

It was a great revelation for both Hishmeh and Jackson to learn that they were not alone, that other people were experiencing the same problems. It was not just in their heads. They did not imagine the pain. They were really sick.

A separate study published last month showed that seven out of ten people admitted to hospital for Covid-19, five months after being discharged, did not fully recover.

While the figures made big headlines, it came as no surprise to those suffering from long Covid and their doctors.

About 10% suffer in the long run

Dr Manoj Sivan, a medical clinical professor and consultant at the University of Leeds, was one of the first physicians to start writing about Covid long-guards last spring. As an expert in rehabilitation medicine, he knew that previous SARS epidemics and MERS had post-viral syndromes long after the epidemics were declared over. He sees the same patterns with the coronavirus.

'Long Covid' gives doctors another mystery, but treatment is possible

“Anyone recovering from Covid is expected to have a good recovery, fully recovered within four to six weeks,” he said. “In about 10% to 20% of people the symptoms may last longer than the period of four to six weeks, and in about 10% of people the symptoms may persist for even longer than 12 weeks, when it becomes a real problem. . “

Sivan said that although the symptoms can vary from patient to patient, there are many. “I would say the big five are fatigue, shortness of breath, pain, brain fog and psychological problems,” he continued.

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

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

“If you’re looking at chronic pain, or, let’s say, high blood pressure or diabetes, it’s a big problem; it’s common in the population and is expensive, but there’s a very streamlined way to manage it. to the GP, you got high blood pressure, you are put on drug A. If it does not work, they add drug B, so there is a protocol, there are clinics and a single clinician can get it right.

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

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

The National Health Service (NHS) in England has set up about 70 long Covid clinics. But the demand is much, much higher than the number of places available. Monique Jackson said that although she was lucky to find doctors who were helpful and understanding, she could not end up in these types of clinics.

Her recovery was ‘up and down’, with new symptoms popping up every few months. “Headache, shortness of breath, I had strange things like blue fingers, and the right side of my face felt like it was falling and it still felt different from the left side. I had the nerve feelings all over my body like hair over the “She became so ill that she had to move in with her family again. She wore a lot of jumpers in the summer and did not shake off the cold shivers. Chest pain and insomnia kept her awake for months.” It was not just fatigue, it was like I forgot how to sleep. I only got one or two hours a night, “she said.

Her symptoms were so bizarre and overwhelming, and she kept searching online to see if anyone else had reported them. When she could not get much, she began to chronicle her experiences online in a visual diary. Gradually, she began to run into other patients and support groups on social media.

Dr. Nisreen Alwan, associate professor of public health at the University of Southampton, said the mobilization of tall Covid patients through social media was accelerating 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 health professionals know about it, but it is important to say that there is still a lot of variation in how many people are recognized and whether they are believed or not, because we do not have a universal standard definition of how long Covid is, ‘she said.

“And it also depends on who you are,” she added. “We also know from the past and from the other diseases that there are groups that are less believed – women, people from ethnic minorities, people with fewer backgrounds – there is a risk that it can still be attributed to psychological presentation, such as angs. ‘

This Covid long distance remover is afraid to shed a year after her infection due to the amount of hair she has lost
Hishmeh and Jackson are both active in patient support groups. Jackson spoke with experts and posted resources on her blog. Hishmeh is the co-founder of Long Covid SOS, an advocacy group that campaigns on behalf of patients to gain more recognition for the condition, more research on it, and more support for those who suffer from it.

Jackson said she made the turnaround about ten months after she became ill. While she is not yet back to her previous self, she feels better. She also said her symptoms subsided noticeably after she received the Covid-19 vaccine. Although experts are still unsure about the science of why this can happen or how long the improvement of patients may take, other Covid elongators have also reported relief after being vaccinated.

Second pandemic

More than 133 million people worldwide are infected with coronavirus. Although it is unclear how many people suffer from long covid, public health experts warn of a ‘second pandemic’ of long-term respiratory illness.

“The scope is enormous,” says Dr. Clare Rayner, a retired occupational health physician and himself a longtime Covid patient. “And the UK is rich compared to most countries, we need to have systems and if we are struggling, the implications for countries that have gone less well and developed are huge, I do not think it is being recorded, we do not know how many people do not have it. ‘

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

Rayner said it was this aspect of long covid that could be of particular concern because it affects people’s ability to return to work. She said very long-term Covid patients experience cognitive problems, such as memory problems, speech problems, concentration, reading or planning their day.

“We have an enormous amount of people who have been ill for a year. They are young people, especially of working age. It seems like most of them were completely healthy before and suddenly can’t work,” she said. “Even if they get better, we find that people have relapsed, they go back, they want to go back and then exercise of the brain or the body can cause a relapse,” she said.

Hishmeh is one of the young people Rayner talks about. Now 27, and a year after his initial infection, he still cannot go back to work. Before Hishmeh became ill, he was a software engineer who did research on artificial intelligence and ‘thought a lot’. He wants to return to his career – but can not.

“I’m 27, it’s my first, golden years and my brain can no longer work at that level, I’m getting exhausted, I’m getting tired, my eyes are strained,” he said.

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