Long COVID takes toll as Japan patients seek answers

For Brian Meissner, the sore throat and fever he experienced in January when he became infected with COVID-19 were harbingers of a host of health issues to come.

Meissner, a 36-year-old resident of Chiba Prefecture, says he had received two COVID vaccine shots and was waiting for a third when he fell ill. After going to a local drive-in clinic and testing positive for the coronavirus, he was prescribed molnupiravir, an oral medication approved for COVID treatment, and was told to rest at home for two weeks.

The medication helped him recover from the acute symptoms of the disease, clearing up his nose and throat. But soon he began experiencing a cascade of other health problems, some of which persist to this day.

During the two weeks, Meissner, who had been on medication for hypertension, saw his blood pressure spike to dangerous levels. He called an ambulance, but no hospital would accept him because he had COVID, he recalls. Then his heart rate went up, even when he was sitting at a desk. He also had headaches, vertigo, chest pain and “brain fog,” a condition marked by confusion and difficulty concentrating.

“I used to run all the time — I ran like three or four times a week,” said Meissner, who has been on leave from work in the IT industry since January. “Now, I can’t run any more. (I’ve had) a feeling that everything around you is kind of not real, it’s kind of fake. I’ve had that feeling for about four months now.”

Meissner is one of many people in Japan and elsewhere with long COVID-19 — a condition with an array of symptoms that haunt some COVID-19 patients for weeks or months after their initial infection.

Long COVID, also known as long-haul COVID or post-COVID condition, is defined by the World Health Organization as occurring in “individuals with a history of probable or confirmed coronavirus infection, usually three months from the onset of COVID with symptoms that last for at least three months and cannot be explained by an alternative diagnosis.”

1 in 5 people

In the third year of the pandemic, there are still a lot of unknowns about long COVID, including what exactly causes it and how best to treat it. But the scale of the problem alone is alarming.

Late last month, the U.S. Centers for Disease Control and Prevention released a study of nearly 2 million people, saying that 1 in 5 adult COVID patients under the age of 65, and 1 in 4 age 65 or older, may develop long COVID. The most common symptoms were respiratory problems and musculoskeletal pain, but many different organs, including the heart and kidneys, can also be affected, the study found.

In Japan, meanwhile, a health ministry-commissioned study of 1,066 patients hospitalized between January 2020 and February 2021 found that over 30% of COVID-19 patients who had one or more of 24 representative symptoms such as fatigue, shortness of breath, weakened muscles, insomnia, decline in concentration and hair loss saw their symptoms persist 12 months after diagnosis.

So far, doctors have taken a symptom-based approach. In late April, the health ministry released a handbook on post-COVID treatment, revising a preliminary version released in December. But in its preamble, the experts wrote that COVID-19, despite having been around for more than two years, is “still fluid” and therefore not all recommendations are “evidence-based.” They noted that some of the content in the handbook is based on the opinions and experiences of the doctors. They added that “entries will continue to be revised as new insights become available.”

The handbook mentions multiple theories on the potential cause of long COVID: direct damage to the organs, particularly the lungs, by the virus; inflammation of the body’s systems caused by immune regulation dysfunction; blood clotting enhanced by the virus; dysfunction of the renin-angiotensin system, which regulates blood pressure; and post-intensive care syndrome, a collection of physical, mental and emotional symptoms that continue after a patient leaves the intensive care unit.

Hormonal imbalances linked

Fumio Otsuka, deputy director of Okayama University Hospital, has analyzed the data of 281 people who visited the facility’s COVID-19 aftercare clinic (CAC) between February 2021 and April 28. He said that throughout this period, fatigue was the most common health issue among his patients, and that many male patients were found to have hormonal imbalance problems.

“Some of our male patients have seen a decrease in their male hormones, particularly 'free' testosterone levels,” said Otsuka, referring to a small percentage of testosterone in the blood not bound to any protein. “Such a decrease typically occurs during men’s menopause, leading to fatigue and depression, but some of our younger patients had low free testosterone levels.”

While it’s hard to determine at this point whether the hormonal imbalances are the cause or an effect of long COVID, doctors may benefit from testing hormone levels in the blood on a case-by-case basis, as patients' symptoms tend to ease as their hormone balance comes back, he said.

Otsuka added that the experience of patients also seems to vary depending on which variant they were infected with.

At the CAC, the number of patients complaining of problems with their senses of smell and taste went up after the delta variant of the coronavirus gained force last summer, Otsuka said. On the other hand, patients who got infected at the end of last year and onward, when the omicron variant began raging, have complained mostly of headaches, difficulty breathing and coughing. Smell and taste issues have receded, he said.

Another trend that has emerged, Otsuka said, is that patients didn’t necessarily suffer from severe symptoms during the acute phase of the coronavirus infection. Seventy percent of the 281 people rested at home or hotels after testing positive, while another 17% were hospitalized but were not serious enough to require oxygen therapy. The remaining 13% received oxygen during their hospitalization.

What’s more, around 10% of the patients the university clinic has seen have developed myalgic encephalomyelitis/chronic fatigue syndrome, he said. ME/CFS is a complex chronic illness that involves severe fatigue, insomnia and cognitive disorders or difficulty maintaining an upright posture.

“ME/CFS is a syndrome, meaning there’s no blood test that can detect it easily,” he said. “It can also be caused by other common viruses such as influenza and herpes, not just the coronavirus. We are trying to find definitive evidence on this syndrome, but there’s definitely a need for more research.”

Research is evolving, but patients say they find proper treatments hard to come by.

Zeeshan Afzal, a 36-year-old bank employee in Osaka Prefecture, says he tested positive for COVID in August 2021, one week after receiving his first vaccine shot. He experienced a fever, chills, cough and shortness of breath during the acute infection stage. While a PCR test he took 20 days later came back negative, he had chest pain when he talked a lot or loudly, as well as heart palpitations. He also felt extremely tired after doing simple household tasks like cleaning and cooking, he recalls. Afzal went to a hospital and took many tests, including an electrocardiogram, but was told that nothing abnormal was found. The doctor prescribed methycobal, a vitamin B12 supplement.

“I felt better after five or six months, but my wife (who also got COVID at the same time as I did) still has some symptoms,” Afzal said, noting that they include fatigue, muscle problems, dizziness and ear pain. “Doctors and researchers should find out proper treatment and rehabilitation programs (for people with long COVID).”

Workplace adjustment needed

Beyond the data, those with long COVID face a host of difficulties in their normal lives, including at the workplace.

Seiichiro Tateishi, a professor at the University of Occupational and Environmental Health in Fukuoka Prefecture, said that employers have their work cut out for them. He has studied post-COVID conditions from the standpoint of occupational physicians and how they can help workers balance treatment with work. Every business in Japan with 50 employees or more is legally mandated to appoint such physicians.

Given the swelling ranks of COVID-19 survivors, residual symptoms will be “a major post-corona issue,” Tateishi said, urging employers to consult doctors for advice on how best to accommodate the needs of long-term patients.

The health ministry handbook, for which Tateishi was one of the authors, cites examples of workplace arrangements made in the past to allow employees with long-lasting symptoms to ease their way back to work.

For example, a department store clerk in her 50s who suffered from fatigue and weakened muscles after her COVID-19 infection was able to get back to work thanks to an opinion letter submitted by her doctor suggesting that she take a break every two hours and gradually extend her work hours. A male restaurant worker who suffered prolonged taste disorders was assigned to duties other than cooking until he got his sense of taste back, after a doctor’s recommendation.

“It may be hard for small and midsize companies to make such accommodations, as they don’t have occupational doctors in-house and they may be limited in their capacity to reduce the burdens of patients,” he said. “But they should consult prefectural occupational health and safety centers for advice if they have employees with post-COVID conditions.”

Meissner, for his part, says he is feeling better, having found a hospital in his neighborhood that connects him to doctors with different specialties. He has “desperately” done a lot of research on long COVID himself and has asked his doctors to try various therapies being used in the U.S. and Europe. He is on several types of medication even today.

To share his experience and know-how, Meissner recently created a Facebook group called Long Covid Japan, with the hope of building a support community among patients.

“I built this page basically to help educate other people that are suffering from long COVID in Japan specifically ... so they don’t have to struggle with research (like I did),” he said.

He also said he wished that the Japanese government would communicate better with other governments to accelerate research on long COVID.

“I really predict that this is going to be a time bomb for Japan,” Meissner said. “This will impact Japan very soon.”