Indonesian group sheds light on confusion over post-COVID-19 symptoms

Juno Simorangkir, 36, still experiences symptoms like hair loss, fatigue, coughing, hypertension and left chest pain after he recovered from the COVID-19 infection.

He was confirmed negative for the virus in April 2020, but “there are up to 40 symptoms that I feel,” Simorangkir told Xinhua on Wednesday.

Simorangkir had consulted several doctors including pulmonologists, cardiologists, and internists, but they did not find anything unusual in his body. Results of an electrocardiogram test also concluded that Simorangkir was in good condition.

In May 2020, Simorangkir started to meet with other COVID-19 survivors from various countries via the internet. They feel the same after-effects of COVID-19 as he suffers.

In August 2020, Simorangkir participated in an international meeting of COVID-19 survivors with World Health Organization (WHO) Director-General Tedros Adhanom Ghebreyesus, virtually.

The meeting inspired Simorangkir to create COVID Survivor Indonesia (CSI), a group of survivors to support each other and share information.

“With this group, we hope that no one will be confused with the ‘long COVID’ phenomenon, or feel lonely and sad amidst pains,” said Simorangkir.

When it was created in last August 2020, CSI was only based on a Facebook group, and now, this community has an Instagram account with more than 7,400 followers.

Apart from survivors, the group is also supported by doctors, epidemiologists, and psychologists.

Once in a while, CSI holds virtual discussions, inviting experts as speakers. Last month, the discussion was about the safety of vaccines for survivors, while in early March the discussion was about how to care for mental conditions after recovering from COVID-19.

They also held the #BeatTheStigma campaign, to fight the stigma against COVID-19 survivors.

There are many survivors who suffer a variety of discriminations because they were considered as community trash and source of infections.

They were also ostracized, and terminated from their jobs as they were constantly sick and considered unproductive.

One of the CSI members is Alida Susanti, 40, a resident of Depok city, West Java province, who lost her father due to COVID-19 and has felt the symptoms of “long COVID” until now.

Amidst such confusion with a series of symptoms, in December 2020, Susanti got acquainted with CSI via the Internet and felt that the group was very useful.

The group answers the survivors’ anxiety over the symptoms, and straightens out hoaxes circulating on various social media, said Susanti.

Since then, Susanti has joined CSI and volunteered to spread information about “long COVID.”

At a press conference in Geneva on Feb. 12, Tedros said “long COVID” affects patients with both severe and mild COVID-19, and the best way to prevent this condition is to prevent COVID-19 in the first place.

Dr. Janet Diaz, an expert with the WHO’s Health Care Readiness team, said at another press conference that the post-COVID-19 condition was a heterogeneous group of symptoms that could occur up to six months after the illness.

According to the expert, reports showed that the most common symptoms were fatigue, post-exertional malaise, and cognitive disfunction sometimes described as “brain fog.”

Shortness of breath, coughing, mental and neurological complications have also been reported, she said.

Dr. Diaz explained that patients experiencing this condition “could have been hospitalized patients,” but also those with mild symptoms, who were treated in ambulatory settings.

“There is still a need to better understand this condition. It is not yet clear who is most at risk, and why it is happening in the first place,” she said.

by Hayati Nupus