As patients suffer, long COVID remains a collection of symptoms with no single cure

Like other Israelis, journalist Melanie Lidman is following the news of a relatively minor uptick in new COVID cases and recommendations from the Health Ministry for how to avoid becoming infected or re-infected by the disease.

However, unlike for most of us, the effects of the full-blown pandemic that began in early 2020 are not behind her and her life has not returned to normal.

Lidman, 38, used to be incredibly physically active. She ran two Jerusalem Marathons, rode 15,000 kilometers on bike tours through many countries, and loved to hike and do yoga.

But now that the Gedera area-based freelance journalist (a frequent writer for The Times of Israel) suffers from long COVID, she can’t do any exercise.

“Now I’m training daily with a physiotherapist’s help to be able to walk 10 minutes without stopping,” Lidman said.

Like for others with the still not completely understood post-acute COVID illness condition, Lidman’s life has been turned upside down by a group of disturbing symptoms.

“There isn’t even full agreement yet on how to define long COVID,” said Prof. Ronit Calderon-Margalit, director of the School of Public Health at Hebrew University and Hadassah Medical Center. “A paper that was published in May [2023] in the Journal of the American Medical Association tried to cluster symptoms that are present more than six months or more after the acute episode. It settled on a list of 12 key symptoms that together define long COVID with some kind of reliability and validity, with each one’s prevalence differing from person to person.”

“Some of these symptoms are brain fog, memory loss, malaise or fatigue, and gastrointestinal problems,” she noted.

Prof. Ronit Calderon-Margalit, director of the School of Public Health at Hebrew University and Hadassah Medical Center. (Tal Margalit)

According to Prof. Gili Regev-Yochay, director of the Infection Prevention and Control Unit at Sheba Medical Center, it is estimated that approximately 10% of people globally who have had COVID suffer from long COVID. The WHO reports that it may even be as high as 20%. The condition is more common in people who have been infected more than once.

Calderon-Margalit added that a survey done by the Israel Center for Disease Control found that 50% of Israelis who contracted COVID before the Omicron variant became predominant reported brain fog for at least six months after the period of acute illness.

Prof. Gili Regev-Yochay, director of the Sheba Pandemic Research Institute and Infection Prevention & Control Unit at Sheba Medical Center. (Courtesy of Sheba Medical Center)

Although doctors are now able to recognize and diagnose long COVID, there is no specific treatment or cure available. At this point, each complaint is treated separately. This is because researchers are still trying to figure out what causes the ongoing symptoms.

A symposium for scientists from around the world took place earlier this month in Santa Fe, New Mexico, where they presented their latest findings on long COVID and discussed potential treatments.

Now that there is basic agreement on how to diagnose the condition, researchers are trying to understand its causes and why some people are affected and others are not.

For instance, a study published last month in Nature identified two protein blood biomarkers that could be associated with the brain fog which many report. Another group of scientists found a possible link between long COVID and a version of a single gene called FOXP4.

A Bar-Ilan University study revealed a disparity in quality of life among COVID-19 survivors from different ethnic groups in Israel. Arabs and Druze reported more symptoms, including pain, discomfort, anxiety, and depression than did Jews.

“Our results revealed that, while pre-COVID quality of life among Jews, Arabs, and Druze in our study was initially comparable, at the 12-month mark after infection the Arab and Druze participants reported a quality of life 11% lower than their Jewish counterparts,” said Prof. Michael Edelstein of the university’s Azrieli Faculty of Medicine.

Because there is not yet a clear approach for treating long COVID, people with symptoms often run from specialist to specialist hoping for relief for specific aspects of the syndrome.

This is what Lidman, who got COVID twice (once before vaccines were available and again after she was vaccinated), did initially while also doing countless hours of research online in a bid to understand what was happening to her. Not only was she extremely fatigued, but she also had vertigo and brain fog, lost her sense of taste and smell for 10 months, and kept getting sick.

Melanie Lidman hiking in the mountains of the Sinai Desert before she became ill with COVID and then long COVID. (Courtesy)

“The problem was that no one was looking at the problem holistically. Each doctor was looking at just the symptoms that were in their wheelhouse, and nobody was looking at the whole picture,” she said.

Eventually, Lidman was able to get a confirmed diagnosis at the long COVID clinic at Sheba Medical Center this past April. However, such clinics at hospitals have since closed, and diagnosis of and care for these patients has shifted to doctors in the community.

Lidman noted that all Israelis in her position can receive treatment through day rehabilitation programs at all the health maintenance organizations.

“Through day rehabilitation I am seeing a physiotherapist, an occupational therapist, and a psychologist. They have weekly meetings to discuss and update each other on every patient. This is really the way to fix this,” she said. “You have to learn to get back into shape, and psychological support is really important.”