Long Covid-19 symptoms overlap with those of myalgic encephalomyelitis/chronic fatigue syndrome and with persistent symptoms from other diseases, such as West Nile virus and Epstein-Barr virus, and major physical trauma, according to the New England Medical Journal.
Yet people with Long Covid-19, like those with ME/CFS (originally called chronic fatigue syndrome), suffer widespread scepticism about their symptoms and stigma.
“After recovering from acute Covid-19, some patients were left with a group of persisting symptoms that were similar to those of people with ME/CFS,” journal founding editor Dr Anthony Komaroff wrote in the June 15 edition.
“Fatigue, cognitive problems, postexertional malaise, disrupted sleep, orthostatic intolerance, myalgias and arthralgias, tachyarrhythmias and gastrointestinal complaints” were among the symptoms he listed.
“Why would multiple different infectious agents and major physical trauma produce a similar syndrome?” he asks, calling for research to unravel the biology behind these diseases, which can strike down young, healthy adults.
Here people briefly share how severe long Covid-19 has shattered their lives, expanding on stories shared in the Sunday Times.
Nancy (not her real name), 47. She has had Covid-19 twice, most recently in March 2023
“The worst symptoms for me are the brain fog, memory impairment and fatigue. I have had bouts of both since early 2022, but I had a bad flare starting in August which has not abated,” she says. “Fatigue has made life unbearable.
“I miss people, friends and socialising. I miss work and I miss making art,” says Nancy, from Cape Town, who was a communications co-ordinator for a university IT department and part-time artist. She had to stop work in October, and creating art has become painfully slow.
“Right now, I can't really use my left hand, which is either completely numb or painfully tingling. I can't hold or pick things up and it's a bit frightening and very frustrating.
“Art gave my life meaning, especially after I had to stop working,” says Nancy, who has many and varied symptoms. She does not know “what is coming next and when they will flare up”.
“I had to move back in with my parents, who are in their mid-80s ... both to save money and because I am literally unable to care for myself. They help where they can, and for that I am beyond grateful ... I try to ask for help only when I absolutely have to.”
Natalie Theunissen, 52. She had Covid-19 in January 2021
“Having Long Covid-19 has made me realise that your ‘normal’ can change at any point. My life has been turned upside down and my quality of life has been reduced to nothing.
We’re in the middle of the greatest mass-disabling event in human history.
— Long Covid sufferer Laura Miers
“My biggest concerns are theeffect it is having on my daughter and on my family,” says the former grade 1 teacher, who feels her loss of independence.
She suffers chronic chest infections, continuous fatigue, brain fog and dizziness, buzzing like an electric shock in her body, aching muscles, balance issues, limb stiffness, sensory overload, a sunburned skin sensation sometimes, heart palpitations, unexplained anxiety and no sense of taste or smell at all.
“It has opened my eyes to what people with ME/CFS must go through,” she says.
Kim Mapley, 51
“The chronic fatigue and constant blinding migraines have hit me hardest. They have changed how I live,” says Mapley, who lives in Joburg with her husband of 22 years.
Her fatigue and disrupted attention span make it impossible for her to work as a copywriter and communications consultant, except for a few ad hoc hours here and there.
“I cannot plan any activities decisively because I don't know if I will have a good day or a bad day. I am a big planner, so not being able to even decide to leave the house until on the day has been very difficult,” says Mapley, who described herself as a “ghost of the person I used to be”.
Faye Kahn, 62. She had Covid-19 in July 2020
“I’m too tired to go for my early morning walks,” says Faye Kahn, who works at Wits in marketing and communications. She still feels completely fatigued some days, nearly three years after being hospitalised for Covid-19.
“After Covid-19 I’m bound to get the first virus in the air, so I have to be extra vigilant now about where I go. Certain smells make me nauseous so I’m cautious about what I eat.
“At the point at which I feel I’ve recovered, I suddenly get another dip.”
Women shared their stories here. Roughly 40% of more than 500 Long Covid-19 patients treated by Stellenbosch physician Dr Jaco Laubscher are men; atypically more than 100 of his patients are under 35.
The fallout of long Covid-19 is going disrupt society, says American sufferer Laura Miers: “We’re in the middle of the greatest mass-disabling event in human history ... And unless people wake up to the long-term consequences of Covid-19, it is going to continue taking folks out like fish in a barrel.”
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