Long COVID and self-management – The Lancet

People with COVID-19 often experience long-term symptoms (i.e. long COVID), including fatigue, shortness of breath, and neurocognitive difficulties.
1
  • Crook H
  • Raza S
  • Nowell J
  • Young M
  • Edison P.
Long covid—mechanisms, risk factors and management.

The mechanisms of disease causing long COVID are unknown and there are no evidence-based treatment options. Clinical guidelines focus on symptom management and various treatment options are being evaluated.

1
  • Crook H
  • Raza S
  • Nowell J
  • Young M
  • Edison P.
Long covid—mechanisms, risk factors and management.

The scarcity of advice has often left people with long-term COVID feeling isolated and frustrated in their search for therapies.

Studies have reported a wide range of self-prescribed medications used for the prevention and management of acute COVID-19, including antiretrovirals, penicillin, vitamin C, traditional medicines, and chloroquine or hydroxychloroquine .
2
  • Sadio AJ
  • FA Gbeasor-Komlanvi
  • Konu RY
  • et al.
Assessment of self-medication practices in the context of the COVID-19 epidemic in Togo.

,

3
  • Quispe-Cañari JF
  • Fidel-Rosales E
  • Manrique D
  • et al.
Self-medication practices during the COVID-19 pandemic among the adult population in Peru: a cross-sectional survey.

,

4
  • Onchonga D
  • Omwoyo J
  • Nyamamba D
Assessing the prevalence of self-medication among healthcare workers before and during the 2019 SARS-CoV-2 (COVID-19) pandemic in Kenya.

Self-prescribing practices are not surprising given the high incidence and mortality from COVID-19, restricted access to health care during shutdowns, and few preventive treatments and therapies for COVID-19.

There is an absence of research on self-management practices in people with long COVID. Patients and patient advocacy groups have reported a lack of timely support and poor recognition of Long COVID, in part attributable to insufficient knowledge and evidence of Long COVID and overwhelmed health systems. Insufficient support has led to loss of confidence and disappointment in health service delivery, leading people with long-term COVID to seek other sources of support and treatment.

People with long-term COVID have reported turning to a wide range of over-the-counter medications, remedies, supplements, other therapies and dietary changes to manage relapsing and relapsing symptoms. Individuals have expressed willingness to try anything because the symptoms have substantial effects on quality of life and ability to work.

Self-prescribing carries potential risks, such as harmful drug interactions and the use of inappropriate treatments.
5
Risks of self-medication practices.

Drugs can be used off-label, in unsafe doses, and sometimes purchased unregulated from overseas. Harmful drug interactions are enhanced due to the complexity and multiple symptoms of long COVID leading to the use of multiple treatments.

People with long-term COVID have sought advice from social media platforms, such as Facebook, where individuals share their experiences of self-management, and online resources, including blogs and medical journals. Due to the weak evidence base, these platforms are a potential source of conflicting information and misinformation.

Long-term symptom self-management is often costly, with some individuals consuming a substantial portion of their income, which threatens to exacerbate existing health inequalities. Other inequalities include geographic disparities in access to clinics for long-term COVID, access to private health care, and health literacy.

Research is needed to understand the self-management practices that are used to manage the long symptoms of COVID; factors affecting their adoption; and the advantages, disadvantages and costs. There is also a need to assess the potential harmful effects of polypharmacy and drug interactions in these individuals. The Therapies for Long COVID (TLC) Study (ISRCTN15674970) will begin to explore self-management practices through a survey of people with long-term COVID. This study aims to be a first step towards understanding this important and understudied public health issue.

JC has been involved in public patient engagement for University College London and University Hospitals Bristol. JC has been a lay member of the National Institute for Health and Care Excellence Covid Expert Panel and a patient representative for other boards and organizations in the UK and Europe. JC has also received honoraria from GlaxoSmithKlein for engaging expert patient reviews and is a citizen scientist member of the Global Horizon Analysis Group of the COVID-END Evidence Synthesis Network. All other authors declare no competing interests. This correspondence and our work is independent research jointly funded by the National Institute for Health Research and UK Research and Innovation (TLC study, COV-LT-0013). The views expressed in this correspondence are those of the authors and not necessarily those of the National Institute of Health Research or the Department of Health and Social Care. We thank the patients who advised us for this Correspondence.

The references

  1. 1.
    • Crook H
    • Raza S
    • Nowell J
    • Young M
    • Edison P.

    Long covid—mechanisms, risk factors and management.

    BMJ. 2021; 374n1648

  2. 2.
    • Sadio AJ
    • FA Gbeasor-Komlanvi
    • Konu RY
    • et al.

    Assessment of self-medication practices in the context of the COVID-19 epidemic in Togo.

    BMC Public Health. 2021; 21: 58

  3. 3.
    • Quispe-Cañari JF
    • Fidel-Rosales E
    • Manrique D
    • et al.

    Self-medication practices during the COVID-19 pandemic among the adult population in Peru: a cross-sectional survey.

    Saudi Pharm J. 2021; 29: 1-11

  4. 4.
    • Onchonga D
    • Omwoyo J
    • Nyamamba D

    Assessing the prevalence of self-medication among healthcare workers before and during the 2019 SARS-CoV-2 (COVID-19) pandemic in Kenya.

    Saudi Pharm J. 2020; 28: 1149-1154

  5. 5.

    Risks of self-medication practices.

    Curr Drug Saf. 2010; 5: 315-323

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