International Long Covid Awareness Day: 'Five years on, I still have brain fog'

Khaleej Times

14-03-2025

Dubai resident Kelly Jenkins contracted Covid towards the end of 2020, when the virus was still mysterious enough to petrify the world. ​Although he had it only for 10 days, he ended up dealing with a debilitating form of long Covid for about nine months.
'My chest felt super tight — I couldn't really breathe — and I was constantly exhausted,' he recalls, when we chat on Google Meet. He was unable to walk across his flat, let alone take the stairs, and struggled with severe brain fog, which left him feeling like someone had snuck into his brain and deleted his thoughts. After undergoing several scans and tests, his doctors informed him that there was some ​scarring on his lungs.
But he began to recover gradually by making a few lifestyle changes — some of which he follows to this day — like including immunity boosting foods in his diet, and having multivitamins and supplements like selenium and magnesium. He also managed to shed 32kgs. But Jenkins also noticed a few other changes: like how he seemed to catch the flu more often post Covid.
Around three months ago, symptoms that seemed to mimic Covid — the brain fog, shortness of breath and constant exhaustion — returned.​ (Jenkins didn't get tested for Covid this time. 'I think in hindsight, I probably should have taken the test,' he says. But the doctor told him that the symptoms were 'very common to the bug that was going around' and had advised him to wait it out.)​
'I've had the flu before, but I never had these symptoms before Covid,' says​ Jenkins, who is ​director — Global Media Partnerships at The Vantage,​ a contributor at Dubai Eye 103.8, and​ a musician​. The symptoms lasted for about two months and would have probably lingered longer if a work trip hadn't whisked ​him away to Davos, ​Switzerland. 'I think the fresh mountain air made a lot of difference.'
'My personal belief is that once you've had it, there are elements of long Covid still there and certain things will retrigger it,' says Jenkins. 'I've got no research, nothing to back that up. But this is from my experience.'
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D​ealing with guilt
They say seeing is believing, but with the death and destruction caused by the Covid-19 pandemic now out of sight, long Covid — or Post Covid-19 syndrome as it's also known — has largely been out of mind.
A 2023 article in The Lancet estimates that 'at least 65 million people are affected by long Covid'; however, there is still considerable scepticism around the condition, with experts holding conflicting views on its prevalence. And although there have been a few encouraging developments — the National Academies of Sciences, Engineering and Medicine (NASEM), for instance, has recently come out with a definition for long Covid — people who have struggled with long Covid point out that it deserves more research.
'One of the most damaging aspects of long Covid is invalidation,' says Dr Akanksha Prakash, a clinical psychologist at German Neuroscience Center who has seen patients break down in her office from the 'stress of having to prove that they are unwell. As the symptoms aren't always visible, many patients encounter scepticism from doctors, employers, and even loved ones.'
​Once, in the early days of his recovery from long Covid, Jenkins remembers pulling his phone out and recording himself panting hard as he walked around the JLT lake. At the time, ​he hadn't returned to work but was able to recuperate at home with the support of his​ organisation. Yet, out of guilt, Jenkins felt like sending the video to his boss even though he hadn't asked for it. 'It's natural to think, 'No one is going to believe me and I am letting everyone down',' says Jenkins. 'But you are not, and in fact, you want nothing more than to just get on with normal life.' His videos were also a sort of record for himself which he could look back at and confirm that, yes, things were really that bad and that he hadn't imagined it after all.
​Looking for support online
Feeling unheard, people often turn to long Covid groups on platforms like Facebook and Reddit, where members swap stories about their long Covid journeys, post about the cocktail of supplements that they've been consuming and the latest experimental therapy they've read about.
Dr Prakash explains that patients often feel like they have fallen through the cracks of traditional medicine and that while some people may benefit from such lifestyle changes, others may try 'everything from extreme detox regimens to obscure supplements, sometimes spending large amounts of dirhams on treatments with little scientific backing.'
A couple of years ago, Edward* travelled to Germany for the procedure Apheresis​ when he struggled with long Covid. 'I've done everything from hardcore medical intervention to stuff that sounds a bit​ woo-woo, and a bit out there,' he says. 'You name it, I've tried it — supplements, dietary changes, and stuff like fasting. I have used up my savings on this thing.'
When he first contracted the virus in 2020, Edward had a challenging but fulfilling job at a secondary school in the UK, where he was in charge of 15 teachers and 350 ​teenage ​s​tudents, and was on the path to professional success. ​He suffered from a mild form of Covid and recovered soon enough, but when he returned to work, something felt off. 'I just felt exhausted,' he says. Once after school, as he was getting ready for his bath, he felt like his heart had burst open from his chest.​ But when he consulted doctors​, they prescribed antidepressants for his 'health anxiety'. 'They were incredibly dismissive,' he says. His fiancé suggested that they move to Muscat for work and by the end of their relaxing six-month stay there, he realised that he 'needed to stop trying desperately to get back to where I was.'
Edward moved to Dubai two years ago and feels like he fully recovered only about 1.5 years ago. It's been a 'steep learning curve' he says,​ adding that he understands his body's limits​ and has had to mould his life around it. 'Before all this, I used to go to school every day and either play football or go biking and cycling after school, or surf during the holidays. Today, I work remotely. I still can't do intense cardio without feeling really dizzy​, and I still get headaches.​'
The future seems uncertain at times: for instance, what if he got worse? He also knows that he may not be able to work remotely forever, and major life decisions like starting a family have been put on hold.
Yet, he considers himself lucky to be surrounded by a supportive network of family, friends and colleagues, and privileged enough to be able to afford to take things a bit slow.​ 'There are people who are still stuck in bed, and can't look after their kids or go to work. And that's the thing that makes me angry — that there are people who have been completely forgotten.'
The data
Professor Basema Saddik and her colleagues at the University of Sharjah led a study where they interviewed 533 Covid survivors, who had been admitted across four hospitals in Dubai and Sharjah with moderate to severe Covid-19 between January 2020 and October 2021. Their aim was to understand how certain risk factors affected the severity of the disease and the likelihood of developing long Covid.
The team's first peer-reviewed paper from this study, published in the European Journal of Public Health in October 2024, concluded that 'Long Covid affected 48.7 per cent of 533 patients, with 46.6 per cent prevalence persisting over a year.' In layman terms, that's nearly half the participants reporting long Covid symptoms.
'These findings underscore the serious and lasting impact of Covid-19 long after the acute infection has passed,' says the professor of public health and epidemiology. 'Many patients reported ongoing issues with fatigue, shortness of breath, joint pain, hair loss and sleep difficulties. Additionally, those who had been admitted to intensive care or had pre-existing health conditions faced a higher risk of lingering symptoms.'
Saddik, who is also the director of the Center of Excellence for Public Health — Research Institute for Medical and Health Sciences, University of Sharjah, adds that another paper from the same study is currently under review and 'provides additional results and more in-depth findings' on long Covid's impact on the quality of Covid-19 survivors' lives. For instance, she explained that women were nearly twice as likely to suffer from long Covid compared to men, and dermatological symptoms such as rashes were very common.
'The study also found that over one-third of long Covid sufferers faced physical limitations at work and nearly one-quarter reported emotional challenges that impacted their job performance,' she explains, adding that she plans to conduct a follow-up study to further track these patients' progress and health outcomes.
'Long Covid is a complex and persistent condition requiring interdisciplinary care and long-term support,' she adds.
Treating long Covid
Medical professionals point out that there is no one specific treatment or test for long Covid.
A quick search on Google throws up the names of healthcare centres that offer long Covid and post-covid care in the UAE. One such place is The Brain & Performance Centre. 'It's hard to quantify how many people live with long Covid because five years after (the global outbreak), we see less and less people suffering from long Covid, probably not because they don't suffer, but because they have learnt to live with it,' says Dr Semer Wang, the medical director.
He explains that their cognitive, rather than physical, abilities are more likely to remain affected today. 'There are people who have lost their ability to concentrate, so a job that would have taken four hours to do might now need six. People might end up taking medication or opt for treatment which, while valid, might only improve the symptoms instead of treating the core issue which, in most cases, is with the brain or even the heart … that's why, people feel overexerted even though everything seems fine.'
'It's very hard to find a linear relationship between the symptoms and long Covid but I think it's possible to suffer from the consequences of Covid five years after,' he continues. 'How we call it, is something else, because there are no specific biomarker tests for long Covid. So, I would say it involves more detective work to come to a diagnosis, as we try to correlate the symptoms with Covid by assessing objective changes. So, for example, if you do high resolution brain scans, you could see signs that should not be there.'
Dr Samir Naik, consultant pulmonologist and head of the department at King's College Hospital London in Dubai, launched a post-covid clinic in November 2021. He meets a wide range of patients in his practice — those experiencing symptoms of long Covid, those who suspect they may have the condition, and those with confirmed diagnoses.
As physicians, explains Dr Naik, their immediate task is to differentiate 'between true long Covid and other medical conditions' with symptoms like tiredness, lethargy, mental fog, memory issues, and breathing problems. 'When assessed, most patients are found to have other causes like chronic fatigue syndrome, overwork and exhaustion, vitamin D deficiency, or anaemia,' he says, adding that Covid may have also revealed the presence of 'subtle, pre-Covid conditions' such as memory loss and dementia.
'Some patients have comorbidities like diabetes and lung disease, which may make recovery harder or worsen their condition,' he adds.
Dr Naik also points out that patients who ended up with lung scarring and clots in the lungs because of severe Covid, and continue to experience issues like cough and breathlessness, do not necessarily fall under the 'long Covid' category. 'Also, many of us were pretty much housebound during Covid and our bodies got deconditioned. For those of us who got Covid and suffered from symptoms, returning to the pre-Covid state has taken time. This was primarily due to deconditioning and could explain why you still don't feel like your normal self,' he explains, adding that in such cases they 'reassure patients'.
Saddik, on the other hand, points out that the word 'health' doesn't only imply physical health — it also includes mental and social well-being. 'And if you take two of those factors away, then it impacts the health of an individual,' she points out.
She insists that long Covid is more prevalent than we think it is. 'And we need to develop awareness campaigns to help people recognise these symptoms, have dedicated long Covid clinics, and insurance coverage for treatments and rehabilitation,' she says.
*Full name withheld on request.
The rise of a 'long Covid economy'
In 2022, former Dubai resident and digital health entrepreneur Ibrahim Rashid launched the startup Strong Haulers, an app to help predict symptoms using wearables for patients with chronic conditions including long Covid. Although the startup has since shut down, Rashid realised that there was a real need for products and services that were tailored to meet the needs of such patients.
Today, he helps to connect other companies in the space and investors. Rashid himself once struggled with long Covid (he is the author of the book Strong Hauler: Learning to Live with Long Covid) and recently released an article titled 'Long Covid: Investing at the Bleeding Edge of Healthcare' on his Substack to educate investors about startups in this space. 'I started using the phrase 'long Covid economy' as I've been engaging in my discourse around healthcare innovation,' says Rashid, who now resides in Chicago. This emerging ecosystem, he continues, has recently seen new ventures tackle issues like access to care, symptom management, drug development and treatment, by launching virtual clinics for such complex conditions, wearable technology like chest straps and wrist-worn devices and more, to help patients manage their health conditions better.