We are ignoring long Covid at our peril, say those living with it

The presence of persistent microclots in the blood of long Covid patients stop cells getting enough oxygen in the tissues to sustain bodily functions. This cellular hypoxia may underpin numerous debilitating symptoms, hypothesises Dr Resia Pretorius of Stellenbosch University. (Photo: Facebook)

By Sam Pearce

11 May 2022

Long Covid is estimated to affect between 10% and 30% of all people infected, which means that already between 150 and 450 million people in the world could be suffering long-term post-viral effects. Of the estimated 15 to 30 million worldwide already suffering from chronic fatigue syndrome before the pandemic, 75% cannot work and 25% are mostly confined to bed. If about 25% of long Covid cases follow the same pattern, the world could be looking at between 30 and 100 million more people permanently disabled.

In the past couple of months, governments all over the world have been lifting mask mandates, from the UK and Denmark to the US and France. But suspension of restrictions is a huge risk to public health in the context of massive fifth-wave case numbers and the potentially severely disabling post-viral syndrome long Covid.

Mlindeni Gabela, a 38-year-old father of two staying in Khayelitsha, is a typical case. After falling sick with Covid-19 he spent three days in hospital in May 2020. He went back to work at the beginning of June, but his shortness of breath and dizziness continued and by the end of the month he was in hospital again.

This boom-and-bust cycle kept repeating: Gabela would work for three weeks, then have to take a week off. “I was a mixer in an industrial bakery, carrying heavy loads up and down. I started having palpitations, vertigo and blackouts. I was having to lie down and sleep at lunchtime to recover. They put me in a different department, but my body still couldn’t cope.”

His workplace doctor recognised long Covid and sent him to the respiratory clinic at Groote Schuur Hospital. Gabela was looking forward to getting expert help and support, but says he was disappointed. His referral letter describes “myriad” symptoms including “chest pains, fatigue, poor sleep and inability to concentrate”. However, because all tests came back normal, these debilitating chronic symptoms were dismissed as “largely psychiatric”.

Gabela says: “I feel like I don’t trust doctors anymore. They always focus on your mind… They never listen to you.”

He found comfort in a long Covid support group on Facebook run by the ME/CFS Foundation South Africa. In July 2020, the chief medical adviser to the US president, Dr Anthony Fauci, described long Covid as “highly suggestive of myalgic encephalomyelitis (ME) and chronic fatigue syndrome”. ME/CFS Foundation director Retha Viviers says that “as well as suffering similar symptoms to us, increasing numbers of long Covid patients are beginning to suffer from the same ignorance, prejudice and lack of care to which post-viral ME patients are vulnerable. So they are coming to us for advice.”

Medical authorities are demonstrating a dangerous lack of awareness of recent research on post-Covid complications, notably studies on the effects of micro blood clotting in long Covid patients by Dr Resia Pretorius of Stellenbosch University. Persistent microclots stop cells from getting enough oxygen in the tissues to sustain bodily functions. She hypothesises that this cellular hypoxia may underpin numerous debilitating symptoms.

Mlindeni Gabela was booked off work on temporary disability support in October 2021. He says family members and workmates say “but you look healthy” and accuse him of being lazy, but Gabela knows he’s “not fit to work, and will be killing myself if I continue”. He has not been paid since January – his wages are now dependent on the outcome of a psychiatric report.

Recent studies have shown that, owing to lack of testing capacity and underreporting in Africa, Asia and South America, the global Covid-19 death toll may be three times higher than official figures – not six million, but closer to 18 million. The World Health Organization (WHO) has estimated it at 15 million.

If infection rates have been similarly underestimated, case numbers could be more like 1.5 billion. Long Covid is estimated to affect between 10% and 30% of all people infected, which means that already between 150 to 450 million people could be suffering long-term post-viral effects.

Of the estimated 15 to 30 million worldwide already suffering from ME before the pandemic, 75% cannot work and 25% are mostly confined to bed. If about 25% of long Covid cases follow the same pattern, the world could be looking at between 30 and 100 million more people permanently disabled.

Bad attitudes

Khairoonisa Foflonker (38), a student affairs manager on the Tygerberg campus of Stellenbosch University, has been ill with long Covid since January 2021. She says she has been fortunate to make considerable progress in the past few months thanks to her physician, but still has ups and downs. “I am tired of being poked and prodded by healthcare providers, but I am learning patience in the process of recovery.”

She recounts an incident in which a nurse at a prominent hospital recently told her that she did not believe long Covid existed. It is frustrating and disheartening to be misunderstood by a healthcare provider, since this attitude could negatively affect patient outcomes. With the help of her occupational therapist, Foflonker has learnt the critical importance of pacing herself in order to make progress with her condition. She would like to see more people warned about the dangers of maskless interaction, particularly young people who don’t understand that they are at risk of long Covid.

Author and book editor Helen Moffett describes her long Covid experience as ‘761 days of being too tired to brush my teeth unless I've taken steroids that day’. (Photo: Facebook)

Author and book editor Helen Moffett, who has been sick for 25 months, describes her long Covid experience as “761 days of being too tired to brush my teeth unless I’ve taken steroids that day”.

She is furious about the lack of government education about long Covid, and the resulting casual attitude to the pandemic. “The public health message seems to be: ‘As long as there are no deaths or hospitalisations, it’s all good.’ No one is talking about disability: the financial, economic, emotional and social impact. People are saying: ‘Oh, the worst is over now, it’s like the flu, we have to live with it.’ Covid is not like the flu: imagine that every 10th flu-suffering colleague of yours was never, ever again well enough to return to work. And that 10th person might be you.”

Moffett says that what particularly enrages her is the implication that, somehow, fit younger people are exempt from serious Covid complications:

“Long Covid can strike anyone, no matter how young and healthy, and can follow infection by any variant, no matter how mild the symptoms […] the biggest risk factor so far seems to be going back to exercise or exertion as soon as you feel better. My Twitter feed is festooned with former gym bunnies, surfers, triathletes and hardcore hikers who ‘hit the gym’ or went snowboarding the minute their acute symptoms stopped – and who are now close to crippled.

“What’s more, we now know that children can and do get long Covid – and, in the wake of the super-infectious Omicron variant, not just a few unlucky ones, but spiralling figures worldwide.”

Mlindeni Gabela is passionate about spreading the word about long Covid. In the run-up to ME Awareness Day on 12 May, he’s been distributing pamphlets, produced by the ME/CFS Foundation, to doctors and local clinics, with pacing tips to manage post-viral fatigue. “I feel I need to teach people about it, and I need to talk about it. There is nothing to hide… This mission gives me purpose. It’s keeping me alive.”

Wasting our lives, in pain

As new Omicron subvariants continue to drive up infection numbers globally, UK Prime Minister Boris Johnson’s deliberate disregard of scientific advice urging caution and US President Joe Biden’s politically motivated abandonment of the mask mandate seem cavalier at best and downright negligent at worst.

Khairoonisa Foflonker. has been ill with long Covid since January 2021. (Photo: Supplied)

When President Cyril Ramaphosa lifted the state of emergency last month, he acknowledged “the many people who are still struggling with the effects of the disease”, but without making any provision for those now physically unable to work, study or parent.

In 1992, following glandular fever at the age of 22, I was experiencing exactly the same post-viral symptoms as Mlindeni. Thirty years later, I am homebound with severe ME and currently spend 75% of my time lying down, only capable of showering once every three days. If there hadn’t been denial of post-viral syndrome back then, there would be medication to manage the condition by now and neither of us would be wasting our lives in bed, in pain.

Research into energy-limiting chronic illnesses has been disgracefully neglected for decades, mostly because the majority affected are women. The gravity of ME has been belittled, despite patients scoring lower on quality-of-life surveys than those disabled by multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and cancer.

long covid pretorius Persistent microclots in long Covid patients stop cells from getting enough oxygen in the tissues to sustain bodily functions. This cellular hypoxia may underpin numerous debilitating symptoms, hypothesises Dr Resia Pretorius of Stellenbosch University. (Photo: Facebook)

Social services are woefully ill-equipped to deal with the challenge of chronic illness. Until long Covid is counted in WHO statistics alongside Covid-19 case numbers and deaths, national public health systems will not be prepared for the tsunami of post-viral problems caused by the pandemic.

This is a mass disabling event and by pretending it’s not happening world leaders are inflicting terrible damage on their own populations. There are already acute labour shortages across the world, and in terms of the global economy, this stubborn denial of long Covid may yet prove to be the biggest weapon of mass destruction currently at large. DM/MC

Sam Pearce is writing a book, Longhaul, about seven years’ travelling around Africa Clockwise in a truck running on WVO while homeschooling her kids lying down and coming to terms with chronic illness. Slowly.

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Bad attitudes

Wasting our lives, in pain