Struggling with Long Covid: Personal Perspectives

Some of us have ‘moved on.’ We live like we are in a post-pandemic era. Perhaps we are the lucky ones who got Covid-19 but do not appear to have been harmed long term. As it is described internationally, these are the “vaccinated, prior infected and relaxed” individuals.

 Other Malaysians have not been so fortunate. Their lives have been “upended”; they are significantly affected by Long Covid or the long-term damage of Covid-19. This article is to share typical stories and struggles of a few individuals whom we have met. We are focusing especially on cognitive impairment post Covid-19. Note that all the names and some personal details of individuals have been changed to protect their privacy.

 Dr Sara is a 68-year-old senior medical consultant. She was careful with Covid-19 mitigation measures and had a vaccine booster. Sadly, during one unmasking at an extended family dinner, she was infected with Covid-19 and developed some respiratory symptoms that did not require hospitalisation. She thought she was getting better but, after two weeks, developed a nasty cough that required her to use inhaled steroids for seven months. That was somewhat manageable, but she found that she could no longer “think on her feet.” Often, when she was seeing a patient in her clinic she had ‘brain fog’ – a lack of focus and mental clarity – this impaired her ability to treat her patients. She struggled to get “back on her feet.” The problems persisted nine months after the infection and did not improve. An established medical specialist known for her sharp mind, Dr Sara decided to stop working when she could no longer easily remember medical information and the medications that were crucial to managing patients effectively. 

 Daud is an 11-year-old boy who used to be active in sports and a good student. He tested positive for Covid-19 when his mother became infected, but remained asymptomatic. He had not yet been vaccinated. After a few weeks, he began to notice his heart beating differently – erratically – especially after sitting up or standing with some dizziness (postural tachycardia syndrome – PoTS). The measured heart rate would fluctuate from 60 to 175 in a matter of seconds. He felt the discomfort of his heart beating fast in his chest (palpitations). He also found difficulty in returning to any sports or significant exercise due to fatigue. The doctors could not find anything wrong with him and his blood test results were normal. They suggested it was psychological (anxiety). More distressing to him was the decline in his academic performance. He found himself unable to concentrate on his studies like before and was generally more tired. Improvement was very slow and took many months. His condition required him to attend school for shorter durations and rest whenever he felt fatigued.

 Once a chatty, active 4-year-old, Lisa is an amazing older sister to her baby brother: she would sing and talk to him every day. She was still too young to qualify for the national vaccination programme (for children aged 5 and above) when everyone in her family, including herself, tested positive for Covid-19 earlier this year. Her parents recalled that she remained asymptomatic and was still active throughout their quarantine period. Six weeks later, Lisa started to stutter (stammer) and would have frequent falls. Her parents brought her to a speech-language therapist for an assessment, hoping to reduce her frustration in stuttering. As investigation and trial treatments continue for Lisa, she continues to struggle with her speech fluency and is also seeing a physiotherapist to support her gait and balance in walking (Note that weakness and walking problems are a recognised feature of Long Covid in children).

 Married with two young children, Mr Lee, a 36-year-old marketing executive, survived a Covid-19 infection but found himself struggling with organising his thoughts, following conversations, and understanding long paragraphs of texts – all skills essential to his job. His struggles were not visible to many as he seemed to be able to walk around and do daily activities independently. Not knowing where he could get support, Mr Lee saw many other healthcare professionals until he stumbled across speech-language therapy through his own online research. He is currently learning strategies to cope with the cognitive communication demands at work. Mr Lee is fortunate that he has received support from his workplace where he could have time-off for rehabilitative sessions and other forms of accommodation at work, so that he would not have to quit his job.

 A 72-year-old, known fondly as Aunty Sana, was one of the many who had severe Covid-19 which progressed to hospitalisation. Aunty Sana completed her vaccinations and was ageing healthily prior to her admission. Before that, she would take care of her grandchildren, cook meals for them, and communicate with them easily. While she had luckily survived, upon discharge, her cognitive communication skills were noted to have deteriorated and she was increasingly frustrated when she could not name familiar objects and people (anomia). Her family initially thought this was part of ageing and that it was normal for her until the deterioration prompted them to seek the support of a speech-language therapist. Aunty Sana is now working together with her care partners and her family in practising how to manage conversations by applying the supportive strategies that they learn in therapy sessions.

 These five individuals highlight the fact that this is a larger problem than most people realise. Thus far, it is neither adequately communicated as public health information nor addressed as a genuine problem. The best local data that we currently have on Long Covid come from the study done by the team at the University Malaya Medical Centre. They showed that 21% of cases had Long Covid three months after the infection. Furthermore, 17.5% of mild cases and 10% of asymptomatic cases had Long Covid. The work performance of 35% of adults in the study was affected.

 In the meantime, data indicate that Long Covid-related cognitive impairment does not discriminate. The data available in other countries suggest that it occurs more often in those admitted to ICU, women and young adults, but could also occur in anyone. Just because you did not get it with the first Covid-19 infection does not mean you do not risk getting it with the next one. Vaccination against Covid-19 infection helps to reduce the risk only partially. The best is to avoid getting an infection in the first place.

 On another level, the related anxiety, fear, uncertainty, guilt, grief and other emotions when Covid-19 and Long Covid are in our midst are felt not only by the person, but also by the care partners, family members, and friends. For some care partners and families, the continuous balancing act to protect loved ones with higher risks for infection and their need for a “normal” life is a real dilemma that may have consequences on their overall well-being, as well as family and other relationships. The “relaxed” SOPs seem to be applied generally to all population groups, despite clear evidence cautioning against this for groups at high risk for Covid-19 infection: older adults, those with underlying health conditions and persons living with disabilities. Such disregard for red flags creates challenges and confusion for the high-risk groups and their care partners.

 It has been recognised internationally that most doctors and health professionals have limited awareness about Long Covid and hence are not always sensitive to the struggles faced by affected individuals or know how to help them. It is vital that the health professional-community review the already available evidence that Covid-19 is a potential disabling condition and grow their capacity to support Long Covid sufferers with cognitive impairment with the best effective therapeutic options.

 Five Suggestions

 In summary, Covid-19 can cause cognitive impairment that disrupts the resumption of “normal” life, and the capacity to work and function effectively. We would like to suggest five areas for action to reduce the Long Covid burden on and impact in the community. 

 1.  Awareness raising

We, as a nation, need to be more aware of the risk of cognitive impairment that Covid-19 can cause. This requires learning about it from reliable sources, as inaccurate or fake information is being spread via social media and online platforms. To enable the general public to have access to reliable sources, the nation needs from the health authorities updated information on Long Covid risk to be regularly shared as public information.

 The media has an important role in keeping up with the science and data on Long Covid and ensuring that the Malaysian public is correctly informed in a timely manner. This will help encourage the public to be more willing to take personal risk reduction measures.

 2.  Prevention

It is important for everyone to maintain protection via reliable mask use and effective indoor ventilation. Completing primary vaccination and a booster are useful, especially for those who do not live in a well-protected bubble.

To avoid an infection, it is best to avoid risky events, especially crowded, unmasked outdoor events and venues, and eating in crowded indoor spaces, especially if the ventilation may not meet standards for low infection risk.

 3.  Data

We need good Malaysian data (disaggregated) on post-Covid cognitive impairment to understand in depth those at highest risk, how long it lasts, and what is effective to treat it, to shape public information targeted at mitigating high-risk behaviour to protect especially vulnerable population groups.

 4.  Support Platform

For people experiencing cognitive impairment and other signs of disability post-Covid, as well as their care partners, it could be helpful to have an online platform for sharing stories as a form of mutual support, and getting information on professional help and health facilities that have expertise and experience in helping persons with Long Covid.

 5.  Cognitive Screening  

There are rehabilitation clinics run by the Ministry of Health and some private health facilities that cater to those who present with Long Covid symptoms. There is now a need to establish on a wider scale viable means of supporting the maximum number of affected individuals with the most scientifically rigorous evidence as it becomes available. This must aim to enable many more healthcare professionals to recognize and diagnose Long Covid and not dismiss it as “just psychological”. It is important that, for early mass identification of the problem, existing screening tools are used to detect cognitive impairment.

 One aspect of the proposed viable means could be to identify clinics (public and private), in various parts of the country, that could follow a standard Ministry of Health-approved protocol and take on the role of specialised therapeutic clinics to support affected persons. These clinics could be system-linked with an analytical research and strategic public information facility under the Ministry of Health, to support data collection, analysis and targeted public awareness raising that fosters responsible and informed behaviour at all levels.

 Provided by:

Dato’ Dr Amar-Singh HSS, Consultant Paediatrician and Advisor, National Early Childhood Intervention Council (NECIC)
Chia-Yi Tay, Speech-language Therapist and Vice President, Malaysian Association of Speech-Language & Hearing (MASH)
Sharifah Tahir, Care Partner, Dementia Advocate and Founder of UniquelyMeInitiatives
Yuenwah San, Honorary Senior Advisor (Disability Inclusion), Social Development Division, United Nations Economic and Social Commission for Asia and the Pacific (ESCAP).


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