A significant number of individuals infected by Covid-19 develop “post-acute sequelae” (commonly termed long Covid).
The World Health Organization (WHO) defines long Covid as “the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation.”
However, definitive diagnostic criteria have yet to be determined.
Covid-19 affects most organ systems in the body.
Long Covid often comprises symptoms that follow an acute infection with substantial effects on the sufferers’ daily well-being and functioning.
It has been estimated that at least 65 to 130 million individuals have long Covid globally, based on a conservative estimated incidence of 10-20% of infected individuals and more than 651 million documented Covid-19 cases to-date globally.
The incidence of long Covid is estimated at 10–30% of non-hospitalised cases, 50–70% of hospitalised cases and 10–12% of vaccinated cases.
The number is likely to be much higher due to many undocumented cases.
Published data on long Covid in Malaysia is limited.
According to the Health Ministry’s Sungai Buloh Covid-19 Rehabilitation Outpatient Specialised Services databases, 474 (63.6%) of 745 survivors experienced long Covid 12 weeks after acute infection.
The five most commonly reported symptoms were fatigue (73.4%); exertional dyspnoea (19.4%); insomnia (13.9%); cough (9.7%) and pain (7.3%).
However, there were no reports of psychological symptoms e.g. anxiety, depression and stress; whether it affected those who had mild acute symptoms or were not admitted to hospital; and the factors associated with long Covid.
An online survey of Covid-19 survivors was done by researchers at University of Malaya (UM) and International Medical University (IMU) from July to September 2021, when there was a nationwide lockdown.
The results were published in the open access journal Plos One in August 2022.
Of the 732 who responded, 56% were without or with mild symptoms during their acute infection.
Almost half were on home quarantine, with the rest admitted to Covid-19 centres or hospitals.
Of those hospitalised, 20% were ventilated while another 23% were admitted to Intensive Care Units (ICU).
The mean duration of hospital stay was 10.9±8.2 days with a minimum of two days and maximum of 52 days.
The limitations of the study included possible recall and/or selection bias, no assessment of whether the symptoms were intermittent or continuous, and no evaluation of the effect of vaccination.
Features of long Covid
More than 100 symptoms have been reported in long Covid.
Fatigue, breathlessness and neurocognitive difficulties are common symptoms.
Fatigue is associated with diminished activity tolerance and post-exertional malaise and symptom exacerbation.
Symptoms of anxiety and depression are common.
One in five Covid-19 survivors in the UM/IMU study reported of experiencing long Covid.
The most commonly reported symptoms were fatigue, brain fog, depression, anxiety and insomnia.
Females had 58% higher odds of experiencing long Covid.
Patients with moderate and severe acute infection had increased odds of 3.01 and 3.62 times respectively for long Covid.
Of the 550 who were working, 194 (35.3%) reported that their work performance was affected – 142 (73%) reduced their working hours, while 46 (23.9%) took leave or resigned from their jobs.
More than 40% had anxiety/depression.
Only 494 (67.5%) of the 732 in the cohort were perceived to be in good health at the time of the survey compared to before they were infected.
If the UM/IMU findings are extrapolated nationally, about one million Malaysians would have long Covid, considering that the reported number of Covid-19 cases exceeded five million on December 4, 2022.
The actual number would be higher because of unreported Covid-19 cases.
There is limited data on how common is the stigma of long Covid.
A United Kingdom study to develop and validate a Long Covid Stigma Scale and to quantify the burden of long Covid stigma, published in November 2022, reported that of 966 participants, the prevalence of experiencing stigma at least “sometimes” and “often/always” was 95% and 76% respectively.
The prevalence of stigma was higher in those who had a clinical diagnosis of long Covid i.e. 97.5% sometimes and 82.5% often/always.
Scientific opinions diverge on some basic long Covid issues which include:
Cause: The cause(s) is unknown with various theories cited in the journals.
Clinical features: Long Covid has been linked to more than 200 symptoms, with some sufferers having organ damage to the heart, lungs, kidneys, skin and brain.
Duration: There is no universally agreed definition of how long symptoms must persist for a diagnosis of long Covid.
The WHO and our Health Ministry state that a person has long Covid if symptoms persist three months after an initial infection.
On the other hand, the United States Centers for Disease Control and Prevention barometer is four weeks.
Management: The clinical guidelines on the management of long Covid have been evolving and will continue to change with time with the increasing knowledge about the condition.
There is as yet no evidence-based treatment options.
The current clinical guidelines focus on diagnosis and symptom management with various treatment options being evaluated.
The Health Ministry’s guidelines on the Management of Long Covid were published in June 2021 but has yet to be updated since then.
Its public information on long Covid, published in February 2022, listed long Covid features and the healthcare facilities where medical attention can be sought.
Patients and patient advocacy groups, globally, have been reporting on the absence of poor recognition of long Covid and timely support.
This has been partly attributed to knowledge gaps about and evidence of long Covid, as well as overwhelmed healthcare systems.
The insufficient support of long Covid has led to disappointment and loss of faith and trust in healthcare service delivery with many sufferers feeling frustrated and isolated in their search for therapies resulting in their seeking alternative support and/or treatment.
The potential risks of self-medication like inappropriate treatments and harmful drug interactions are real.
Likewise, healthcare professionals, who have to manage long Covid sufferers daily, are also frustrated with the non-updating of the Health Ministry’s management guidelines and lack of empathy by some employers towards sufferers.
The reader can protect himself and others from long Covid by protecting himself from getting infected with Covid-19 in the first place.
The simple, proven measures recommended by the WHO to help do this are:
> Taking up offers of Covid-19 vaccines/boosters
> Wearing well-fitted masks
> Cleaning hands regularly
> Avoid catching coughs and sneezes, and
> Ensuring indoor spaces are well ventilated.
The WHO Clinical Management of Covid-19 Living guidelines (January 13, 2023) contain 16 new recommendations for rehabilitation of adults with long Covid i.e. a strong recommendation that exertional desaturation and cardiac impairment following Covid-19 should be ruled out and managed before consideration of physical exercise training; and 15 conditional recommendations on rehabilitation services and interventions as well as patient education and skills training.
Malaysia is a Vice President of the 75th World Health Assembly, the governing body of the WHO.
Healthcare professionals who provide care to Covid-19 and long Covid patients are awaiting the Health Ministry’s response to WHO’s latest guideline with bated breath.
Dr Milton Lum is a past president of the Federation of Private Medical Practitioners Associations and the Malaysian Medical Association. For more information, email firstname.lastname@example.org. The views expressed do not represent that of organisations that the writer is associated with. The information provided is for educational and communication purposes only, and it should not be construed as personal medical advice. Information published in this article is not intended to replace, supplant or augment a consultation with a health professional regarding the reader’s own medical care. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.