Ardila Syakriah, Jakarta – In Indonesia, government officials would boast about the country's COVID-19 recovery rate as they try to suppress the rising number of deaths.
But missing from the conversations are COVID-19 survivors who have to live with symptoms long after being cleared of the coronavirus infection. They are known as COVID-19 long-haulers.
Clinical pathology professor Aryati from Surabaya, one of the epicenters of the outbreak in Indonesia, has been dealing with infectious diseases for decades. But what she has been experiencing since she tested positive for COVID-19 in late May remains a mystery even to her.
Aryati, who chairs the Association of Indonesia's Clinical Pathology and Laboratory Medicine specialists (PDS PatKLIn), tested negative in mid-July, but her chest pains stayed until mid-August. A doctor ran a cardiac CT scan on her and said it was myocarditis – an inflammation of the heart muscle often found among COVID-19 patients – and would take time to heal.
But until now she gets tired easily. Long meetings that she could handle before the infection she now finds overwhelming.
She said her brain was "cloudy and unclear" and she tended to forget things easily after surviving COVID-19. She also suffered from hair loss and found it hard to sleep – none of which she had experienced before, she said.
"I've come to a point where I thought of taking leave from work," Aryati told The Jakarta Post on Tuesday.
But as her expertise has become even more essential now, she simply could not afford it. She has been among the experts the government regularly consults regarding COVID-19 and has many students under her care.
With her work requiring great focus, Aryati said her persistent health problems had taken a toll on her productivity.
"It's extremely disturbing, I hope to get back to my previous condition," she said.
Eight months into the pandemic, much is left to be learned about COVID-19, including its long-term effects and how it affects survivors' quality of life.
The World Health Organization, in its Sept. 9 update, said that, while people typically recovered from COVID-19 within two to six weeks, for some, symptoms might linger or recur for weeks or months following the initial recovery, even among those with mild cases.
Looking into other coronavirus infections, the agency cited a study showing that with the severe acute respiratory syndrome (SARS) that emerged in 2003, there was a persistent and significant impairment of exercise capacity and health status in SARS survivors over 24 months. Another study revealed that 40 percent of people recovering from SARS still had chronic fatigue symptoms 3.5 years after being diagnosed.
The WHO said COVID-19 might increase the risk of long-term health problems, as it could affect not only the lungs, but also the heart, brain and the nervous system – resulting in, for example, anosmia, or the loss of the sense of smell, and cognitive impairment in terms of memory and concentration, musculoskeletal and mental health.
An Italian study published in July on JAMA Network Open, part of the Journal of the American Medical Association, found that 87.4 percent of 143 patients who had recovered from COVID-19 reported persistence of at least one symptom, particularly fatigue and dyspnea, or shortness of breath.
A German study published also in July on the same platform found that 78 percent of 100 recovered patients had heart abnormalities in a median of 71 days after testing positive, regardless of preexisting conditions, COVID-19 severity or cardiac symptoms.
A study by the United States' Centers for Disease Control and Prevention (CDC) carried out on 274 people 14 to 21 days after their positive test results found that symptoms that might persist include fatigue, cough, congestion or shortness of breath, loss of taste or smell, headache, body aches, diarrhea, nausea, chest or abdominal pain and confusion.
The survey found that 35 percent of the respondents had not returned to their usual state of health at the time of the interview, including young people with no underlying conditions.
A 36-year-old COVID-19 survivor who wishes to be identified as Juno is still taking medicines for his palpitations, or heart pounding, after having tested negative for the virus in May. His chest pains come and go.
Up until July, he sometimes suffered from pain in various parts of his body. Also up until then, he said he was feeling very weak and experiencing "brain fog". One time, he said, he found himself trying to send a message that did "not make any sense" on WhatsApp – among other symptoms.
Juno went to several doctors, who ran tests on him but appeared to be just as clueless about his condition. Some deemed it psychosomatic and another referred him to a psychiatrist, he said.
Juno highlighted the need for long-haulers like him to have a support system that would allow them to be honest about their symptoms.
He sought this from international support groups online, and in late August, he, alongside many others globally, spoke with WHO chief Tedros Adhanom Ghebreyesus regarding their conditions.
"We demanded 'three Rs': recognition – we want acceptance that we exist and are not making things up –, rehabilitation – the medical world must build a system for post-COVID-19 treatment – and research – this must be carried out continuously," Juno said.
He recently established a support group for Indonesian long-haulers on Facebook.
Saartje Hersefin, 79, who had been hospitalized for almost a month until she tested negative in late July, is still suffering from anosmia. Saartje has hypertension, diabetes and heart disease, and her COVID-19 symptoms back then were fever and gastric pain, with white spots discovered on her lung images.
"I'm worried about not being able to smell fire or gas leaks," she said.
Lung specialist Erlina Burhan said the receptors the novel coronavirus targeted were found in many organs, and these damaged organs could take a long time to heal, even after patients no longer have the virus. How long the healing process takes would depend on how severe and broad the damage was, she said.
She said that, even if much was still unknown about the virus, it was about time the discussion on COVID-19 went beyond transmission, symptoms and therapy to the long-term effects of the disease.
"There are still so many questions to be answered. What's important is not to get ourselves into these unanswered questions, because it'll only put us at a disadvantage for a long time," internist Erni Juwita Nelwan said. "People need to know that, even with the majority of cases going to recover, there's this condition in which a portion of the people is not going to be that lucky."