Living With Long COVID: 'You Feel Like You Have Been Poisoned'

"The sensation often felt akin to being poisoned."

Katherine Francis, 30, has been living with long COVID for three and a half years. "I was originally infected in October 2020, just a week before starting a new job in PR," Francis told Newsweek. "Three and a half years later, much of my life is still largely confined to the four walls of my home, with occasional outings to various hospital appointments.

"I've been diagnosed with Inappropriate Sinus Tachycardia, Dysautonomia, asthma and lung scarring to name a few, all attributed to Long COVID."

Long COVID can affect anyone, irrespective of the severity of their initial infection. At least 65 million individuals have been affected by this chronic post-viral condition worldwide, a study published in the journal Nature Reviews Microbiology in January 2023 reports, equating to roughly 1 in 10 individuals infected with SARS-CoV-2.

Among the more than 200 symptoms associated with long COVID, brain fog is one of the most widespread and long-lasting, with a recent study, published in the journal Scientific Reports, finding nearly 90 percent of people with long COVID experiencing fatigue, forgetfulness and brain fog. These effects on cognition and memory can significantly alter an individual's ability to carry out everyday tasks, with one recent study published in the New England Journal of Medicine estimating that these impacts on cognitive performance can be equated to a temporary drop of six IQ points.

Bella MacDonald, a 20-year-old psychology student in Yorkshire in the U.K., was just 17 when she was infected. "You know when you're trying to remember something and it's on the tip of your tongue but you just can't grab it, it's like that, permanently," she told Newsweek.

"[Before COVID] I was an A* student, suddenly everything was gone. Like someone had wiped the past two years of learnt material from my brain, and not only that, my spelling was (and still is) atrocious. Beyond that, my speech dissipated, I sounded like someone with aphasia, unable to find words, use the right words, pronounce them correctly. I became unrecognizable to those around me."

But her symptoms soon developed beyond brain fog and fatigue. "I was suddenly gripped by tremors throughout my body and unbelievably painful headaches that left me feeling as though someone had squeezed my brain in a vice. Migraines and vision problems followed."

Bella MacDonald's mother, Sarah, has also been suffering with long COVID since 2021. "In the early days you go through stages," she told Newsweek. "Bedridden, housebound, boom and bust, researching, learning to pace...all desperately trying to make sense of your body and what it's doing. I remember trying to watch something with subtitles on the TV, something I'd previously had no issues with, and I literally couldn't tolerate it. It was too much for my brain to work out."

Sarah MacDonald, who previously ran a small but successful beauty salon in Yorkshire, said that two and a half years later she has not been able to return to work. "The more fatigued I'd become the more words I would forget," she said. "My mum has Alzheimer's and the similarities between her losing her speech and how I was affected initially with cognitive dysfunction were astonishing.

"People struggle to understand how you can be so poorly because you look ok on the outside, there's no broken bones, you're not attached to a drip or bald from chemo (although I did eventually lose a lot of hair) so they think that because you look ok that you are improving...but inside your body, you feel like you have been poisoned."

But hope may be in sight for the millions of long COVID sufferers like Francis and the MacDonalds. On February 22, a major discovery was announced by researchers from Trinity College Dublin and FutureNeuro into the underlying mechanisms of long COVID-induced brain fog.

Published in the journal Nature Neuroscience, the study demonstrated that brain fog in long COVID patients is associated with disruptions to the blood brain barrier—a selective, semi-permeable membrane that prevents toxins and infections spreading from our blood to our brain. This blood vessel "leakiness" was only observed in long COVID patients who had experienced brain fog and cognitive decline.

Brain fog was also associated with dysregulation of the blood's self-clotting system, dampened immune activity, and inflammation.

"For the first time, we have been able to show that leaky blood vessels in the human brain, in tandem with a hyperactive immune system may be the key drivers of brain fog associated with Long COVID," the study's senior author Matthew Campbell, professor in genetics and head of genetics at Trinity and principal investigator at FutureNeuro, said in a statement. "This is critically important, as understanding the underlying cause of these conditions will allow us to develop targeted therapies for patients in the future."

Francis said that, despite the unsettling nature of these findings, research like this was an exciting progression in the battle against long COVID. "Long Covid has proven to be elusive in standard diagnostic tests, leading to many of us experiencing medical gaslighting," she said. "This is a very real and very physical disease.

"I think as these pieces of research continue to come to light, it shows we are progressing away from the initial belief that this is solely a respiratory virus, as we're seeing the broader impact it is having on individuals. It's encouraging to see these insights gaining traction, as they validate the experiences of individuals grappling with long COVID for many months and years. Looking ahead, I really hope that we'll witness the initiation of clinical trials for potential treatment options in the near future."

Sarah MacDonald added that she was grateful for any research into the condition. "We are desperate to find answers and hopefully a cure and a prevention...so all research is welcomed. Long COVID is multi systemic, so I don't think there will be just one answer, but the more we know and the more proof we have of exactly how it affects the body and organs the better."

Sarah MacDonald, @longcovidlifestyle, and Francis, @lifeofa_fashiongirl, have both started Instagram pages to raise awareness about long COVID and support others going through similar experiences. Bella MacDonald meanwhile is studying at university having achieved three A's in her end-of-school exams.

"Recovery is possible," Sarah MacDonald said. "It is hard work and there will be periods of relapse, but you can improve and live again. Maybe not in the same way as you did previously but in a quieter, more mindful way. I appreciate everything now, I don't take life for granted anymore because I've been shown how easily it can be taken away."