KUALA LUMPUR (May 27): First, Larissa Lumandan left her mobile phone in the freezer. Next, she could not remember what items she needed to bring when moving to Kuala Lumpur from Sabah or even how to arrange them in her luggage.
“It took me three days to pack a simple suitcase. It was, like, as though I didn’t know how to pack things. It’s never happened to me before, never,” the 32-year-old writer told Bernama.
It did not stop there. The Kota Kinabalu native said after moving to Kuala Lumpur last month, she would regularly do silly things like trying to find clothes she had chosen to wear while holding the said clothes, and rewashing dishes over and over again because she kept forgetting she had washed them.
It was only when she ended up in Avenue K, while trying to get to the Suria KLCC shopping mall via the connecting tunnel – a place she used to go to often as a student in Kuala Lumpur – that she realised something was wrong.
She described her mind as being “very blur”. In medical terminology, it is called brain fog, one of the most common symptoms of long Covid or post-Covid syndrome.
Other than brain fog, Larissa suffered from fatigue, cough, and hair loss, the latter appearing a few weeks after she recovered from Covid-19 in February this year. Her case was considered mild, even though she described her symptoms as “terrible”. She is vaccinated against Covid-19 and has also received her booster shot.
Despite her current symptoms, she has not sought treatment, saying her symptoms were improving.
Larissa is one of the estimated tens of thousands of long Covid sufferers in Malaysia that health authorities do not know about, possibly to the detriment of the patients’ future health. Experts are also concerned that this undercount will result in a healthcare system unprepared to care for such large numbers of Covid-related medical conditions in the future.
Long Covid by numbers
According to the World Health Organisation (WHO), long Covid is the myriad of symptoms that develop or return or remain weeks or months after patients recover from Covid-19. Most symptoms improve after three months though they can also last for over a year.
The WHO estimates between 10 and 20 per cent of former Covid-19 patients have long Covid, although the definition varies from country to country, while the US Centers for Disease Control (CDC) estimates the rate to be higher at one out of five among adults under the age of 65, and one in four among the senior citizens.
As of May 26, Malaysia recorded almost 4.5 million Covid-19 cases. That means the number of long Covid cases could be from 449,000 to over 899,000, according to WHO estimates.
However, the government reported that fewer than 20,000 people had long Covid by December 2021, and more than 9,000 have undergone rehabilitation for long Covid at public facilities as of May 10.
“I suppose (the undercount is because) not all of the patients come for follow-up or the patients suffer in silence; they think the symptoms may be normal so that’s why they don’t seek help,” said Dr Sally Tee, consultant neurologist at Pantai Hospital Kuala Lumpur.
The WHO lists common symptoms of long Covid as fatigue; shortness of breath or difficulty in breathing; memory, concentration, or sleep problems; persistent cough; chest pain; trouble speaking; muscle ache; loss of smell or taste; depression or anxiety; and fever.
In Malaysia, the most common symptoms of long Covid are fatigue, difficulty in breathing, coughing, joint and muscle pain, anxiety and brain fog, according to the Ministry of Health.
Although severe cases have a higher chance of developing long Covid, asymptomatic and mild cases can also develop the syndrome.
Infectious disease specialist Dr Bushra Megat Johari, who is doing a study on long Covid among patients at Universiti Malaya Medical Centre, told Bernama the fact that long Covid could affect every patient regardless of severity was partly why there was an undercount.
“Most of the follow-up (cases are) those who were admitted to hospital – you know, Categories Three to Five (moderate to severe) cases – so we might not pick up those in Category One and Two (asymptomatic and mild). It depends if they come in for medical attention,” she said.
According to current guidelines, asymptomatic and mild cases recover at home and are only known to Health Ministry officials if and when they report their infection status. Data on long Covid depends on self-reporting as well, which leaves out those who sought treatment in places other than at a government facility.
Said Dr Helmy Haja Mydin, consultant pulmonologist at Pantai Hospital Kuala Lumpur: “Like in private practice, for example, the people who come here (Pantai Hospital) … if I see patients for long Covid or for rehab issues, there isn’t a database I can report to that would capture these numbers.
“Similarly I have patients or friends who decided that maybe traditional medicine is the best way forward to help with their fatigue or whatnot.”
Why it is important
Experts agree that getting accurate numbers of long Covid sufferers is key to forming policy and for capacity-building in order to provide the necessary healthcare and support for long Covid sufferers down the line.
Most symptoms of long Covid go away after an average of three months but some people can suffer for longer than that. One of them is Asmah (name has been changed).
A mother of two and avid hiker, Asmah caught Covid-19 in December last year and, six months later, still has bouts of fatigue, cough, anxiety, and breathlessness. She is vaccinated but had not received her booster when she got sick.
“I tire easily now. And if I take the stairs from the basement parking to the office, I have to stop and catch my breath on the first floor,” she said, adding that she has not been able to go hiking since then.
She told Bernama she has not sought treatment for her symptoms but may soon if the symptoms continue or get worse.
Studies have determined that long Covid is a disabling condition but not much else. Experts say symptoms could last even longer as this is a new disease and little is known about the syndrome.
“Long Covid can attack any organ, any system, including in neurology, the brain, spinal cord, and nerves. Other systems, the lungs, the heart, the muscle, even our intestines can be affected,” said Dr Tee.
A CDC study published May 25 confirms it, finding that Covid-19 patients were twice more likely to develop medical conditions such as respiratory symptoms and lung and clotting problems such as pulmonary embolism post-Covid. Senior citizens, aged 65 and above, are more prone to developing kidney failure, neurological conditions, and mental illness. The study analysed the medical records of almost two million people.
Other analyses, including by the Bank of England and the World Bank, report that countries face a possible labour shortage and an overburdened healthcare system in the future unless something is done to prepare for them now.
Data is important but getting the information may not be that easy.
Dr Helmy suggested requiring medical practitioners in the private sector to report long Covid cases to a database, while Dr Bushra said using MySejahtera was one way of following up on Covid-19 patients and collecting data.
She also said there needed to be more public awareness on long Covid to encourage people to come forward for treatment so as to head off any future complications.
“Patients should be screened for heart disease and metabolic complications, such as diabetes, that may occur,” she said.
As for Dr Tee, she said it is important for patients to seek help for all long Covid symptoms especially psychiatric symptoms such as depression due to the stigma attached to mental health conditions.
All said the best solution, however, is not to get Covid-19 in the first place. Experts stressed the importance of masking up, getting vaccinated and boosted, saying that the vaccines and booster shot will reduce the chances of developing a severe case, which in turn reduces the chance of developing long Covid.
Larissa credits the vaccine and booster for saving her life. She said when she had Covid-19, she could not stop coughing, her phlegm was brown and had the consistency of latex, and she could barely walk to the bathroom or breathe.
“I’m vaccinated and boosted as well, and my symptoms are like these. Imagine what my symptoms would have been like if I did not get my jabs,” she said. — Bernama