Still many unknowns, but long-COVID is real and deserves support for rehabilitation, says expertPHOTO: Nasief Manie/Spotlight

Still many unknowns, but long-COVID is real and deserves support for rehabilitation, says expert

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“I think I’m in trouble,” came the message through to Professor Veronica Ueckermann one evening during the first surge of COVID-19 in South Africa in the winter of 2020. It was a distressed call made by a 48-year-old theatre nurse who worked alongside Ueckermann in the ICU frontline. Ueckermann, who is also a professor of internal medicine at the University of Pretoria and an ICU specialist, shifted into high gear with other doctors to save their colleague who was diagnosed with COVID-19.

They succeeded.

But what they didn’t know then was that months later the nurse would be ailing from ongoing medical symptoms put down to the catch-all of long-COVID.

“It’s a case study, but it was also very close to my heart,” says Ueckermann, who has become a specialist and researcher on the long-term effects of COVID. She recently presented on long-COVID during a webinar of the South African Academy of Family Physicians. “The nursing sister had numerous comorbidities, including a raised BMI, diabetes, hypertension, and asthma. When her symptoms didn’t get better, the hospital just wanted to have her medically boarded because they couldn’t be sure when she would be well enough to work again,” says Ueckermann.

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She is cautious too, pointing out that there’s still little definitively known about long-COVID and new research is only in its infancy. Much of the difficulty lies in the wide-ranging symptoms and how individuals are affected. There are also varying recovery times, different underlying conditions and susceptibilities, and the reality that many people are simply not diagnosed. It makes the term “long-COVID” an umbrella term for everything from brain fog or mental confusion and fatigue to depression and shortness of breath and chest pains. Others also describe general body aches and continued loss of smell and taste.

The post-COVID condition

In October 2022, the World Health Organization (WHO) released a factsheet that states that between 10% and 20% of people who are diagnosed with COVID-19 continue to have symptoms beyond three months of first getting ill and develop what the WHO refers to as post-COVID condition. Many more people say symptoms plague them still even after nearly two years.

“The condition can be debilitating, causing disabling symptoms and functional deficits. It can significantly impact people’s ability to work, engage and participate fully in family and community life. Mental health effects can directly result from long-COVID, but may also develop due to prolonged suffering and distress caused by the condition,” reads the WHO factsheet.

The WHO’s recommended treatment, however, is non-specific, stating: “Post-COVID-19 condition can be supported with help from their families, peers, employers, and the community and they can also benefit from tailored rehabilitation.”

According to the National Institute for Communicable Diseases (NICD), “Every long-COVID patient is different, as such, every patient will need treatment specific to their symptoms which can be managed by their family doctor or clinic. There are no drugs to prevent long-COVID. Long-COVID is not a contraindication to vaccination, and COVID-19 vaccination may even sometimes improve long-COVID symptoms. Long-COVID is treated by slow, stepwise rehabilitation, and appropriate management of symptoms.”

The non-specific and the unknowns

Ueckermann says the non-specific and the unknowns are the biggest challenges to getting a better handle on how to manage, treat, and cure long-COVID. She agrees with the WHO sentiment that research must advance and, along with this, there needs to be unequivocal recognition that long-COVID is real and deserves support for rehabilitation.

“It’s so difficult to know exactly what we are looking at, but what is sure is that it is something that it is a dysfunctional, debilitating entity,” she says.

Ueckermann says there are distinct categories that appear to be present among sufferers. “There are three components, but we don’t know what each brings to the table. There is a genetic component because we see long-COVID in certain populations much more than in others. And then there is also thrombo-inflammation. This is when there are ongoing small clot formation in the smallest part of the circulatory system, the capillaries, and this causes organ dysfunction. There’s also ongoing inflammation, so this is dysregulated inflammation. For many people, COVID will trigger an auto-immune disease like lupus or rheumatoid arthritis because their immune system is just so dysregulated,” she says. (Spotlight previously reported on the potential role of micro-clots in long-COVID here.)

Dysregulation, she explains, is when the body can’t switch off the immune response or the inflammation response once it fights off an illness successfully.

“We need our immune response, also our inflammation response, but we also need this to be curbed once an insult to the body is gone. It seems like there is chronic, ongoing dysregulation but we also can’t non-specifically suppress an immune system,” she says.

Ueckermann says when this essential control mechanism is disturbed, it causes tissue damage as well as organ damage. And when small clots in capillaries form, it negatively affects the oxygen and nutrient exchange in the body. While healthy people are able to break down these micro blood clots through a process called fibrinolysis – people with long-COVID have an impaired ability to do so.

Two elderly women at a vaccination site in Khayelitsha
A vaccination site in Khayelitsha. PHOTO: Nasief Manie/Spotlight

Greater awareness and education needed

Ueckermann agrees with the WHO’s call for greater awareness and education so patients feel heard and supported. Many people resort to joining online support groups through platforms like Facebook. They share their challenges and stories and give each other support when they feel misunderstood and frustrated that they can’t get well and doctors can’t help. Ueckermann says there needs to be help for patients’ individual needs because not finding solutions will add to mounting pressure on the healthcare system.

“Because of COVID disruptions, many cancers are now presenting at later stages. There are cases of TB and other illnesses that were neglected. And now we have long-COVID that requires diagnosis after diagnosis for exclusion so all of this drives up costs,” she says.

lung There are other associated costs for people who cannot work or are performing sub-optimally trying to work while feeling unwell. Children affected by long-COVID do worse at school and lose interest in their sports and other activities that they used to enjoy, she says.

Last year, Spotlight reported on a dedicated long-COVID clinic at Groote Schuur Hospital in Cape Town. As far as we could establish, such specialized long-COVID clinics are very rare in South Africa.

“Long-COVID remains inaccurately defined and as a result, standard treatment guidelines for the condition as a whole have not yet been developed,” says Foster Mohale, Spokesperson for the National Department of Health. “However, standard treatment guidelines to address the symptoms and conditions associated with long-COVID are in place,” he says. “These guidelines guide assessment and treatment, and provide criteria for referral from primary healthcare to more specialised services.”

Mohale adds that the burden of disease is of “enormous concern and needs to be better understood and quantified”. But says the department’s data shows that visits by adults to public sector primary healthcare facilities remain below pre-pandemic levels, which suggests that any increase in the burden of disease has not resulted in an increased burden on health services. He also emphasises the need to have up-to-date vaccinations, adding that “people who are vaccinated are less likely to develop long-COVID”.

Research ongoing

Ueckermann says it’s a positive development that as awareness is growing, so are studies, including studies by the Medical Research Council and many of the country’s universities. She says scientists are looking at everything from the role of green tea extracts and the use of SSRIs (Selective serotonin reuptake inhibitors) that are commonly used to treat depression.

“These are all ongoing studies, so we have to wait to see the data coming through but it’s promising that everyone is trying to understand exactly what this long-COVID is and the most important thing is that we continue making this a greater area of priority in healthcare,” she says. It matters for the growing number of patients, or for her colleague who she says still needs help to get from “doing better,” to fully recovered.