Sufferers, doctors call for more awareness and support
Explaining long COVID to others is among the toughest challenges for sufferers, who need targeted help and rehabilitation while they slowly recover from symptoms such as fatigue, difficulty concentrating and chest pain.
Patients and doctors here call for greater awareness of the condition, which can affect one’s personal life and workplace performance for the six months or more it takes for recovery.
Take Ms Anne Soh, who organises arts and culture events for a non-profit organisation.
Since contracting COVID-19 in end-February, the 51-year-old has had to reduce her workload, direct her team from her bed and hand over on-site work to colleagues.
“Instead of meeting in person, I try to arrange things on the phone. I also have to space out phone calls because I can get breathless,” says Ms Soh, who suffers from fatigue and brain fog and has difficulty concentrating.
The hardest part for her is explaining her condition and new needs to people. “Most people are supportive, but a very few do wonder if I’m making it up,” she says.
Difficult to track long COVID numbers
Long COVID is the term used to describe the signs and symptoms thought to be due to acute viral infection, though these persist or emerge after the first four weeks, says Dr Barnaby Young, head of the Singapore Infectious Disease Clinical Research Network at the National Centre for Infectious Diseases (NCID).
He told The Straits Times in March that most COVID-19 patients will recover within four weeks after infection. Some may find their symptoms persisting for four to 12 weeks, with an even smaller number having symptoms that go beyond this period.
The Ministry of Health does not track the number of patients with persistent symptoms after COVID-19, according to a written response to parliamentary questions submitted in April.
However, Dr Young was part of an NCID-led study published last year, which tracked COVID-19 patients identified in 2020 before Singapore started its vaccination programme. The study estimated that 10 per cent of these recovered COVID-19 patients who were unvaccinated reported persistent symptoms for six months after the initial infection. He says it is difficult to tell whether these symptoms were because of the COVID-19 infection or some other condition. There was also no control group to compare whether symptoms persist after other respiratory virus infections.
Some doctors report seeing a greater demand for post-COVID-19 medical services.
In March, private healthcare group IHH Healthcare Singapore began offering a post-COVID-19 medical evaluation to check lung and heart function, as a result of demand noted by private clinics at its hospitals.
Cardiologist Edgar Tay from Asian Heart & Vascular Centre at Mount Elizabeth Hospital sees about two patients a week with post-COVID-19 symptoms, most commonly fatigue, chest pain, breathlessness and heart palpitations. This is more than last year.
His clinic offers the post-COVID-19 medical evaluation along with private clinic Respiratory Medical Associates located at Mount Elizabeth Novena Hospital. Both hospitals are under IHH Healthcare Singapore.
Dr Lim Jeong Hoon, senior consultant at the department of medicine at National University Hospital (NUH), started a Post COVID Rehab Clinic at NUH and Ng Teng Fong General Hospital in February. The clinic expanded from seeing patients once a month to fortnightly, and now weekly.
Dr Lim has seen about 100 patients since February, with many reporting fatigue and difficulty in concentrating.
Asked whether cases of long COVID could be under-reported here, Dr Tay and Dr Lim say this is possible because patients might fear discrimination.
Dr Tay says patients may also not know what post-COVID-19 symptoms to look out for or think there is no treatment.
Dr Lim also cites “socioeconomic status and workplace culture resulting in denial of symptoms and presenteeism”.
Presenteeism is the act of showing up for work without being productive. People with fewer financial resources may not be able to take time off to rest or seek medical care, for example.
Dr Young points out that vaccination and boosters “significantly reduce” the frequency of long COVID syndrome.
“There is good evidence that long COVID is also less common after Omicron variant infection, compared with earlier variants such as Delta. Based on data from Britain, among vaccinated individuals, 5 to 10 per cent of them may report persistent symptoms four weeks after Omicron infection,” he adds.
Long COVID at the workplace
Mr Nav Vij, co-founder of brain health start-up Neurowyzr, thinks workplaces are not prepared for the impact of long COVID.
He says many companies offer mental health support, but counselling alone is not enough for long COVID.
His start-up offers “digital brain health screening” through cognitive tests administered through laptops or mobile devices. These tests check for problems with cognition, including those associated with long COVID brain damage.
Neurowyzr’s Digital Brain Function Scan is registered with the Health Sciences Authority and offered through private healthcare partners Parkway Shenton and Precious Medical.
Mr Vij anticipates greater demand for this and other brain health services as workers deal with the slow recovery from long COVID.
“A long-term, holistic approach that incorporates clinical brain health testing and monitoring to inform a proper diagnosis should be the standard.
“Receiving a diagnosis can enable the person to be recognised as having a physical illness that needs treatment and not be labelled as a poor performer at work,” says Mr Vij.
One of Dr Lim’s early patients returned to work despite having difficulty concentrating. The patient made mistakes at work and had to see Dr Lim for rehabilitation.
Dr Young of NCID says: “It is important to allow yourself to rest during this period and gradually get back to your usual activities, rather than ignoring symptoms and trying to just get through.
“Support from employers, family and friends is important to help with this.”
The problem is that Singapore has a culture of presenteeism that could make it difficult for workers with long COVID to admit their condition or get the help they need, doctors say, citing research from Japan that shows under-reporting of long COVID there because of the work culture.
Lower workloads and targeted physical rehabilitation are helpful for those with long COVID, but again, work culture can make it difficult for workers to ask for such modifications to their roles.
Singapore also ranks the lowest in Asia for help with such adjustments at the workplace, according to a survey by international consulting firm Mercer Marsh Benefits.
The survey results released in January found that 67 per cent of Singapore workers do not have access to lifestyle modification support, which could include flexiwork for pregnant mothers or those battling chronic health issues.
Dr Lim at NUH calls for more awareness and targeted support for patients with long COVID and notes that the United States Department of Health and Human Services declared long COVID a disability last year.
“This condition is not malingering,” he says. “Society should educate the public to avert prejudice against the victims. A multi-tiered effort ought to be prepared to facilitate timely access to health professionals and accommodate their functional limitations in the community and workplace environment.”
He has recommended cognitive training and relaxation techniques for long COVID sufferers with brain fog and have difficulty sleeping, as well as physical therapy for those who suffer fatigue.
He adds: “Exercise intensity should be meticulously prescribed and gradually adjusted by rehabilitation doctors and therapists as inadequate exercise protocol may cause harm and exacerbate the patient’s condition.”
Coping with long COVID – pacing and acceptance
Dr Young of NCID says: “Postacute COVID syndrome is complex and highly variable. We do not have a drug treatment specifically for long COVID.”
Instead, treatments are offered to relieve symptoms, as well as for any other health condition identified. Some patients are referred to rehabilitation specialists for a graded exercise programme.
“We also talk to patients about their fears and provide reassurance and guidance to help pace their recovery,” he says.
Pacing is a keyword for long COVID sufferers like Ms Jillian Cheong, who used to rock climb once a week before contracting COVID-19 in February. Now, the 37-year-old needs to nap after breakfast to have the strength to eat lunch.
Pacing means to balance rest and recovery with the physical and mental demands of living.
Ms Cheong used to work as a flexi-adjunct teacher in schools. She would teach, go home and spend time with her three children aged four to nine, and stay up at night painting. She is also an artist who exhibits and sells her work.
This year, she planned to take time off to focus on her family and art. Instead, she sometimes needs her parents and husband to help take the kids to and from school. She asks her children to do their homework on her bed so she can supervise them while lying down.
One day, she had a restless night, followed by no nap after breakfast. It sent her back to bed for three days.
“I couldn’t take the kids to school. I couldn’t do anything,” she says.
“I’ve had a complete change in lifestyle. I have a certain amount of energy in a day and can’t exceed it. I find that if you work within that energy level every day, you may be able to slowly extend it. If you exceed your energy level, it undoes all your hard work,” she says.
Similarly, Ms Soh, the arts advocate, is exhausted by a 500m walk home from the bus stop, though she used to go on long walks of up to 14km before contracting COVID-19 in February.
She has seen some improvement after visiting a dedicated post-COVID-19 rehabilitation clinic in April, via a referral from a polyclinic.
She worked with an occupational therapist to understand the new limits of her body. From cooking every day, she now tries to cook once a week for her husband and three children aged 17 to 23. She is building up to exercising for 10 minutes twice a week.
To ensure she had strength to be interviewed by The Straits Times, she did not go out the previous day and rested at home instead.
“There were days I couldn’t accept how everyone around me who had recovered from COVID-19 was okay, but I wasn’t. But then there were days when I was too tired to care and needed to rest,” she says.
She hopes to raise awareness of long COVID and gather others into a support group. It is less isolating to hear from others in the same position and it might also make the case stronger for the accommodations they need.
“The hardest thing is explaining this condition to people,” she says. “Some think there’s nothing wrong with you. But I’m comparing myself now to myself pre-COVID-19.”
| Treatment and rehabilitation
Symptoms Long COVID is a syndrome or group of symptoms occurring in people who have recovered from COVID-19 infection. These symptoms persist or emerge four weeks after the initial infection.
Dr Barnaby Young, head of the Singapore Infectious Disease Clinical Research Network at the National Centre for Infectious Diseases (NCID), says the syndrome is “complex and highly variable”.
Symptoms include fatigue or lethargy or tiredness, brain fog and difficulty concentrating, cough and shortness of breath. The majority of patients steadily improve over time, he adds.
Dr Lim Jeong Hoon, senior consultant at National University Hospital’s (NUH) department of medicine, says symptoms present without clear evidence of organ damage. His patients exhibit fatigue, breathlessness and heart palpitations. Some have headaches, insomnia, anxiety or depression or have lost their sense of taste or smell.
Dr Edgar Tay, a cardiologist from private clinic Asian Heart & Vascular Centre, mostly sees long COVID patients with fatigue, chest pain and palpitations. He says other symptoms include ringing in the ear, joint pain and gastrointestinal symptoms such as diarrhoea and loss of appetite.
Dr Young and Dr Lim add that the diagnosis of long COVID is based on the symptoms presented by patients after excluding other causes.
In October last year, the World Health Organisation (WHO) defined long COVID as a “post-COVID-19 condition” that “cannot be explained by an alternative diagnosis”.
Treatment Doctors The Straits Times spoke to say there is no specific treatment for long COVID.
Treatment is based on the symptoms presented by patients – for example, cardiac and pulmonary rehabilitation for some of Dr Tay’s patients, or cognitive training for patients with impairment to brain function.
Long COVID sufferers can get polyclinic referrals to post-COVID-19 rehabilitation clinics, including those at NUH, Ng Teng Fong General Hospital and NCID.
Dr Tay’s private clinic also offers a post-COVID-19 evaluation service in collaboration with another private clinic, Respiratory Medical Associates, and the IHH Healthcare Singapore group.
Long rehabilitation The WHO notes that symptoms of long COVID generally have an impact on everyday functioning. Symptoms may also fluctuate or relapse over time.
Dr Lim says many patients recover within six months, but a small number may suffer for more than a year. Some self-limit their activities as a result, while others suffer “incapacitating physical, mental and emotional distress”.
Last year, the United States Department of Health and Human Services classified long COVID as a disability.
Dr Lim calls for more awareness of the condition here so sufferers can get the support they need. “It’s important to give the body sufficient time for recovery and then scale up activities,” he says.
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