First published in the Harvard Public Health Review on 23rd May 2021. An article on Long COVID, a post-viral condition following the COVID-19 infection.
I observe with interest regarding the developments surrounding the COVID-19 restrictions in the UK, where I currently reside, and in Malaysia, where my family is. As the UK ramps up the vaccination rates, lockdown restrictions have slowly been lifted on 17th May 2021 with the aim of lifting all restrictions at the end of June 2021 (Prime Minister’s Office, 2021b). Early this year, Malaysia had declared a state of emergency (BBC News World-Asia), and this month, had entered a third full lockdown or ‘Movement Control Order (MCO)’ in certain Malaysian states before announcing a nationwide MCO from 12th May to 7th June 2021 (Sipalan & Latiff, 2021). In Oxford, our local disinformation protestor preached to onlookers the usual spiel on ‘how COVID-19 is a hoax’ just last Saturday. In Malaysia, vaccine wariness had caused the Ministry of Science, Innovation & Technology to make signing up for AstraZeneca vaccination optional. This allowed the public to sign up for the vaccination regardless of their age, which unintentionally deprioritised elderly folks, those with co-morbidities, and the underprivileged without internet access who were still up for the AstraZeneca vaccine. The vaccination slots were gone within 3 hours. The second phase of AstraZeneca vaccinations are only now open for citizens 60 and above on 26th May 2021 (Bernama, 2021). A story for another time.
In April 2021, 65 MPs and peers in a cross-party group had urged the UK Prime Minister Boris Johnson to consider the “untold human suffering” caused by long COVID (Middleton, 2021), a post-viral condition, which was largely ignored in the first and second wave of the pandemic, even though the UK health minister, Matt Hancock had acknowledged the burden of long COVID in November 2020 (Reuters, 2020).
There was no mention of long COVID and statistics on its prevalence on the Ministry of Health Malaysia (Kementerian Kesihatan Malaysia, 2021) website and according to Dr Christopher Lee, infectious disease advisor of the Ministry of Health Malaysia, “There’s very little data on long Covid in Malaysia. But some of these patients are being followed up by the relevant medical subspecialties such as respiratory physicians, neurologists, etc.” (Batumalai, 2021). The haphazard nature of how both countries had implemented condor sanitaire is not unique to both countries (ah, politicians!), but both countries, especially Malaysia, have failed to consider the detrimental impact of long COVID, not just on the disease burden and livelihoods of individual patients and their families, but to the country’s economy. According to the WHO, long COVID are persistent symptoms of COVID-19. A quarter of COVID-19 survivors will continue to have persistent symptoms for a month, with 1 in 10 suffering these symptoms of more than 12 weeks. Symptoms of long COVID can be extremely debilitating; the symptoms include, fatigue, muscle pain, shortness of breath, ‘brain fog’ (cognitive dysfunction), and autonomic dysfunction. Women and healthcare workers are at risk. The odds of how you can progress to getting long COVID does not depend on the severity of the COVID-19 infection (Davis et al., 2021; WHO Europe, 2021). Yet, we are not doing enough to warn the public about long COVID. We are still focussing on the mortality rates of COVID-19 but dismissing the long-term disability associated with poorer quality of life due to long COVID.
The overlapping similarities between long COVID and myalgic encephalomyelitis (ME) cannot be dismissed (Amitay & Komaroff, 2020; Geddes, 2020; Smyth, 2021). ME is a complex, chronic multi-systemic disease. A characteristic feature that may be present in both diseases is post-exertional malaise (PEM) where minimal physical or mental exertion (e.g., brushing your teeth, replying an email) can cause serious health paybacks to the patient at 24 to 72 hours later, in the form of increasing of levels of fatigue and other symptoms, such as cognitive dysfunction, lasting from days, weeks to months (Davis et al., 2021; Décary et al., 2021). According to Dr Charles Shepherd, the ME Association UK advisor, about 10% of long COVID patients could develop an ME-fatigue like condition from our understanding of previous outbreaks such as the SARS outbreak in 2002 (Smyth, 2021). ME affects women 1.5-2 times more than men (Lim et al., 2020). We still do not understand why some patients and not all patients, develop long COVID after a COVID-19 infection, in the same way, we do not understand why only some patients develop ME post infection.The psychologisation of myalgic encephalomyelitis and Long COVID may be one of the greatest medical scandals in the 21st century. Click To Tweet
Perceptions of ME differ across the Atlantic. Harvard and Stanford are just the few top universities of the world focussing their efforts on finding the biological causes of ME in collaboration with The Open Medicine Foundation. In the UK, it is a constant battle between ME patient groups, ME biological researchers such as The Morten Group Oxford, and the medical establishment, for ME to be taken as a serious multi-systemic disease in the last 30 years. The burden to improve from ME is placed on the patient – apparently, certain illness beliefs and membership of patient groups hamper progress (White et al., 2007; De Gucht, Garcia, den Engelsman, & Maes, 2017). Already, a UK journalist, George Monbiot, had been blamed for spreading long COVID, “for just talking about it” (Monbiot, 2021). My fear is that the symptoms experienced by long COVID patients will be psychologised in the same way ME is psychologised i.e., to originate from the mind, and the majority of patients who will be dismissed and have their symptoms belittled, will be women. It is estimated that “1.1 million people in private households in the UK reported experiencing long COVID.” Over the four week period ending on 6th March 2021, females had a higher prevalence of persisting COVID-19 symptoms at 12 weeks. Prevalence was also highest among the 25 to 34 age group (Office for the National Statistics, 2021). These were young and healthy people who did not die from COVID-19 but are left disabled from the condition.
We can learn a lot about long COVID from ME, and vice versa. For a comprehensive response towards COVID-19, we must include long COVID in our planning, including budgeting for long COVID research. The UK has dedicated £18.5 million for long COVID research (Prime Minister’s Office, 2021a) and I hope this research will be directed to understanding the biological causes of long COVID and to find effective treatments. On the other hand, the US health agency – the National Health Institute are investing $1 billion towards investigating long COVID (Subbaraman, 2021). My message to doctors? As the brilliant physician William Osler had once said, “Listen to your patients. They’re telling you the diagnosis.”
- Bahasa Melayu: Simptom Susulan Covid (Long Covid): Krisis Kesihatan Awam yang Akan Datang | Code Blue
- How Hubris and Misogyny Affect Patient Care
- Bahasa Melayu: Bagaimana Hubris dan Ketidaksaksamaan Gender Memberi Kesan Negatif Terhadap Pengalaman Pesakit | Code Blue
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Amitay, O., & Komaroff, A. L. (2020, August 19). We know too little about Covid-19 “long-haulers.” We need a comprehensive study. The Guardian. Retrieved from https://www.theguardian.com/commentisfree/2020/aug/19/we-know-too-little-about-covid-19-long-haulers-we-need-a-comprehensive-study BBC News World-Asia. (2021, January).
Batumalai, K. (2021). Struggling Every Day To Breathe: Malaysian Long Covid Survivor. Galen Centre. Retrieved from https://codeblue.galencentre.org/2021/03/02/struggling-every-day-to-breathe-malaysian-long-covid-survivor/
Malaysia declares Covid state of emergency amid political challenges. BBC News. Retrieved from https://www.bbc.co.uk/news/55625448
Bernama. (2021, May 17). Senior citizens can apply for AstraZeneca vaccination from May 23 to 26. The Edge Markets. Retrieved from https://www.theedgemarkets.com/article/application-phase-two-astrazeneca-vaccine-injection-senior-citizens-will-be-open-may-2326-—
Davis, H. E., Assaf, G. S., McCorkell, L., Wei, H., Low, R. J., Re’em, Y., … Akrami, A. (2021). Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact. MedRxiv, 2020.12.24.20248802. https://doi.org/10.1101/2020.12.24.20248802
De Gucht, V., Garcia, F. K., den Engelsman, M., & Maes, S. (2017). Do changes in illness perceptions, physical activity, and behavioural regulation influence fatigue severity and health-related outcomes in CFS patients? Journal of Psychosomatic Research, 95, 55–61. https://doi.org/10.1016/j.jpsychores.2017.02.009
Décary, S., Gaboury, I., Poirier, S., Garcia, C., Simpson, S., Bull, M., … Daigle, F. (2021). Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Journal of Orthopaedic & Sports Physical Therapy, 51(5), 197–200. https://doi.org/10.2519/jospt.2021.0106
Kementerian Kesihatan Malaysia. (2021). COVID 19 Malaysia. Retrieved May 23, 2021, from http://covid-19.moh.gov.my/
Lim, E.-J., Ahn, Y.-C., Jang, E.-S., Lee, S.-W., Lee, S.-H., & Son, C.-G. (2020). Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Journal of Translational Medicine, 18(1), 100. https://doi.org/10.1186/s12967-020-02269-0
Middleton, J. (2021, April 19). Boris Johnson urged to consider ‘untold human suffering’ of long Covid in lockdown easing. The Independent. Retrieved from https://www.independent.co.uk/news/uk/home-news/boris-johnson-long-covid-lockdown-b1828607.html
Monbiot, G. (2021, April 14). Apparently just by talking about it, I’m super-spreading long Covid. The Guardian. Retrieved from https://amp.theguardian.com/commentisfree/2021/apr/14/super-spreading-long-covid-professor-press-coverage#
Office for the National Statistics. (2021). Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 1 April 2021. Retrieved May 23, 2021, from https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/1april2021
Prime Minister’s Office. (2021a). £18.5 million to tackle long COVID through research. Retrieved May 23, 2021, from https://www.gov.uk/government/news/185-million-to-tackle-long-covid-through-research
Prime Minister’s Office. (2021b). Further easing of COVID restrictions confirmed for 17 May. Retrieved May 23, 2021, from https://www.gov.uk/government/news/further-easing-of-covid-restrictions-confirmed-for-17-may
Reuters. (2020, November 16). Many thousands suffering from long COVID, UK health minister says. Reuters. Retrieved from https://www.reuters.com/article/uk-health-coronavirus-britain-hancock-idUKKBN27W2EF
Sipalan, J., & Latiff, R. (2021, May 3). Malaysia makes AstraZeneca COVID-19 vaccine optional amid safety fears. CNN. Retrieved from https://www.reuters.com/world/asia-pacific/malaysia-makes-astrazeneca-covid-19-vaccine-optional-amid-safety-fears-2021-05-03/
Smyth, C. (2021). Covid-19: The similarities between “long Covid” and ME. In BBC Northern Ireland. Retrieved from https://www.bbc.co.uk/news/uk-northern-ireland-55369434
Subbaraman, N. (2021). US health agency will invest $1 billion to investigate ‘long COVID.’ Nature. Retrieved from https://www.nature.com/articles/d41586-021-00586-y
White, P. D., Sharpe, M. C., Chalder, T., DeCesare, J. C., Walwyn, R., & group, the P. trial. (2007). Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurology, 7(1), 6. https://doi.org/10.1186/1471-2377-7-6
WHO Europe. (2021). In the wake of the pandemic: preparing for Long COVID (2021). Retrieved May 23, 2021, from WHO website: https://www.euro.who.int/en/health-topics/health-emergencies/coronavirus-covid-19/publications-and-technical-guidance/2021/in-the-wake-of-the-pandemic-preparing-for-long-covid-2021