Long COVID: Difference between revisions

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* Long term consequences of COVID-19 which usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body for more than 12 weeks.
* Long term consequences of COVID-19 which usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body for more than 12 weeks.


The long term sequelae of COVID-19 awaits consensus definition, and a variety of nomenclature has been used to describe the long term signs and symptoms of COVID-19. This includes the patient directed terms "Long Covid" <ref name=":0">BMJ. Why we need to keep using the patient made term “Long Covid”. The BMJ Opinion. Weblog. [Online] Available from: https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/ [Accessed 7 January 2021].</ref><ref name=":2">Callard F, Perego E. [https://www.sciencedirect.com/science/article/pii/S0277953620306456 How and why patients made Long Covid]. Social Science & Medicine. 2020;268:113426.</ref><ref>Nature. Long COVID: let patients help define long-lasting COVID symptoms. Available from: https://www.nature.com/articles/d41586-020-02796-2 (accessed 7 January 2021).</ref><ref name=":3">The BMJ. NICE guideline on long covid. Available from: https://www.bmj.com/content/371/bmj.m4938 (accessed 7 January 2021).</ref><ref name=":7">Office for National Statistics. The prevalence of long COVID symptoms and COVID-19 complications. Available from: https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications (accessed 7 January 2021)</ref>, "Long-Haul Covid" <ref name=":2" /><ref>Nath A. [https://n.neurology.org/content/95/13/559.long Long-Haul COVID]. Neurology. 2020;95(13):559-560.</ref> and "Long Haulers" <ref>Nature.The lasting misery of coronavirus long-haulers. Available from: https://www.nature.com/articles/d41586-020-02598-6 (accessed 7 January 2021).</ref><ref>Baig AM. [https://onlinelibrary.wiley.com/doi/10.1002/jmv.26624 Chronic COVID Syndrome: Need for An Appropriate Medical Terminology for Long‐COVID and COVID Long‐Haulers]. Journal of Medical Virology. 2020;Oct 23.</ref>, plus other terms including "Post-COVID-19 syndrome" <ref name=":1" /><ref>Goërtz YMJ, Herck MV, Delbressine JM, Vaes AW, Meys R et al. [https://openres.ersjournals.com/content/6/4/00542-2020 Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?]. ERJ Open Research. 2020;6(4):1-10.</ref>, "Post-COVID Syndrome" <ref>NHS, National Guidance for Post-COVID Syndrome Assessment Clinics. 2020. Available from:https://www.england.nhs.uk/coronavirus/publication/national-guidance-for-post-covid-syndrome-assessment-clinics/ [Accessed 7th January 2021].</ref>, "Post-Acute COVID-19" <ref>https://www.bmj.com/content/370/bmj.m3026</ref>, and "Post-Acute COVID-19 syndrome"<ref>https://www.england.nhs.uk/coronavirus/publication/national-guidance-for-post-covid-syndrome-assessment-clinics/</ref>. For the purposes of consistency, this page will refer to the long term consequences of COVID-19 as "'''''Long Covid'''''" and to "'''''People living with COVID-19'''''". We will refer to "Long Covid" because this term acknowledges that disease cause and course are as yet unknown, makes clear that “mild” COVID-19 is not necessarily mild, avoids “chronic,” “post” and “syndrome” that may delegitimise peoples experiences, draws attention to morbidity, and centres people with disability <ref name=":0" />. We will refer to "People living with COVID-19" to align with existing person first language <ref name=":8">https://evidence.nihr.ac.uk/themedreview/living-with-covid19/</ref> and applying knowledge from other health care conditions with experiences of stigma <ref>https://www.nhivna.org/file/5dcbdcb83254e/BP-19-2.pdf</ref>.     
The long term sequelae of COVID-19 awaits consensus definition, and a variety of nomenclature has been used to describe the long term signs and symptoms of COVID-19. This includes the patient directed terms "Long Covid" <ref name=":0">BMJ. Why we need to keep using the patient made term “Long Covid”. The BMJ Opinion. Weblog. [Online] Available from: https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/ [Accessed 7 January 2021].</ref><ref name=":2">Callard F, Perego E. [https://www.sciencedirect.com/science/article/pii/S0277953620306456 How and why patients made Long Covid]. Social Science & Medicine. 2020;268:113426.</ref><ref>Nature. Long COVID: let patients help define long-lasting COVID symptoms. Available from: https://www.nature.com/articles/d41586-020-02796-2 (accessed 7 January 2021).</ref><ref name=":3">The BMJ. NICE guideline on long covid. Available from: https://www.bmj.com/content/371/bmj.m4938 (accessed 7 January 2021).</ref><ref name=":7">Office for National Statistics. The prevalence of long COVID symptoms and COVID-19 complications. Available from: https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications (accessed 7 January 2021)</ref>, "Long-Haul Covid" <ref name=":2" /><ref>Nath A. [https://n.neurology.org/content/95/13/559.long Long-Haul COVID]. Neurology. 2020;95(13):559-560.</ref> and "Long Haulers" <ref>Nature. The lasting misery of coronavirus long-haulers. Available from: https://www.nature.com/articles/d41586-020-02598-6 (accessed 7 January 2021).</ref><ref>Baig AM. [https://onlinelibrary.wiley.com/doi/10.1002/jmv.26624 Chronic COVID Syndrome: Need for An Appropriate Medical Terminology for Long‐COVID and COVID Long‐Haulers]. Journal of Medical Virology. 2020;Oct 23.</ref>, plus other terms including "Post-COVID-19 syndrome" <ref name=":1" /><ref>Goërtz YMJ, Herck MV, Delbressine JM, Vaes AW, Meys R et al. [https://openres.ersjournals.com/content/6/4/00542-2020 Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?]. ERJ Open Research. 2020;6(4):1-10.</ref>, "Post-COVID Syndrome" <ref name=":12">NHS, National Guidance for Post-COVID Syndrome Assessment Clinics. 2020. Available from:https://www.england.nhs.uk/coronavirus/publication/national-guidance-for-post-covid-syndrome-assessment-clinics/ [Accessed 7th January 2021].</ref>, "Post-Acute COVID-19" <ref>https://www.bmj.com/content/370/bmj.m3026</ref>, and "Post-Acute COVID-19 syndrome"<ref name=":12" />. For the purposes of consistency, this page will refer to the long term consequences of COVID-19 as "'''''Long Covid'''''" and to "'''''People living with COVID-19'''''". We will refer to "Long Covid" because this term acknowledges that disease cause and course are as yet unknown, makes clear that “mild” COVID-19 is not necessarily mild, avoids “chronic,” “post” and “syndrome” that may delegitimise peoples experiences, draws attention to morbidity, and centres people with disability <ref name=":0" />. We will refer to "People living with COVID-19" to align with existing person first language <ref name=":8">National Institute of Health Research. Living with Covid19. Available from:https://evidence.nihr.ac.uk/themedreview/living-with-covid19/ (accessed 7 January 2021).</ref> and applying knowledge from other health care conditions with experiences of stigma <ref>Watson S, Namiba A, Lynn V. [https://www.nhivna.org/file/5dcbdcb83254e/BP-19-2.pdf The language of HIV: a guide for nurses]. HIV Nursing. 2019;19(2):BP1-4.</ref>.     


== What is Long Covid? ==
== What is Long Covid? ==

Revision as of 17:36, 7 January 2021

Original Editor - Darren Brown
Top Contributors - Darren Brown, Jess Bell, Olajumoke Ogunleye, Kim Jackson, Shwe Shwe U Marma, Robin Tacchetti, Tarina van der Stockt, Lucinda hampton, Candace Goh and Chelsea Mclene

Introduction[edit | edit source]

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is the virus that causes coronavirus disease (COVID-19) [1]. The effects of COVID-19 have been characterised across different time points [2]:

  • Acute COVID-19 infection with signs and symptoms of COVID-19 for up to 4 weeks.
  • Ongoing symptomatic COVID-19 with signs and symptoms of COVID-19 from 4 weeks up to 12 weeks.
  • Long term consequences of COVID-19 which usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body for more than 12 weeks.

The long term sequelae of COVID-19 awaits consensus definition, and a variety of nomenclature has been used to describe the long term signs and symptoms of COVID-19. This includes the patient directed terms "Long Covid" [3][4][5][6][7], "Long-Haul Covid" [4][8] and "Long Haulers" [9][10], plus other terms including "Post-COVID-19 syndrome" [2][11], "Post-COVID Syndrome" [12], "Post-Acute COVID-19" [13], and "Post-Acute COVID-19 syndrome"[12]. For the purposes of consistency, this page will refer to the long term consequences of COVID-19 as "Long Covid" and to "People living with COVID-19". We will refer to "Long Covid" because this term acknowledges that disease cause and course are as yet unknown, makes clear that “mild” COVID-19 is not necessarily mild, avoids “chronic,” “post” and “syndrome” that may delegitimise peoples experiences, draws attention to morbidity, and centres people with disability [3]. We will refer to "People living with COVID-19" to align with existing person first language [14] and applying knowledge from other health care conditions with experiences of stigma [15].

What is Long Covid?[edit | edit source]

Long Covid has been preliminarily defined by The National Institute for Health and Care Excellence (NICE), the Scottish Intercollegiate Guidelines Network, and the Royal College of General Practitioners, as the presence of signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for 12-weeks or more and are not explained by an alternative diagnosis. This includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and "Post-COVID Syndrome" (12-weeks or more) [16].

The rapid and dynamic review of Long Covid evidence by the National Institute for Health and Care Excellence (NICE) suggests that Long Covid may be made up of 4 phenotypes [14]:

  • post-intensive care
  • post-viral fatigue
  • permanent organ damage
  • long-term COVID

Consensus has not yet been reached on a Long Covid case definition [6][17][18], however attempts have been made to characterise Long Covid as prolonged with multi-system involvement and significant disability [17].

Long Covid Symptoms[edit | edit source]

Long Covid usually presents as clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body [16][17][19][20][21]. Long Covid can include a range of 205 different signs and symptoms across body systems including but not limited to: pulmonary, cardiovascular, gastrointestinal, reproductive, genitourinary, endocrine, renal, dermatologic, musculoskeletal, neurological, neuropsychiatric, immunological, ophthalmic, and audiological [17]. A list of common Long Covid symptoms is provided by The National Institute for Health and Care Excellence (NICE) [22].

The most common Long Covid symptom is fatigue [17][23][24][25][26][27][28][29]. The most frequently reported Long Covid symptoms after 6 months include fatigue, post-exertion malaise, and cognitive dysfunction [17]. The multidimensional, episodic and often unpredictable nature of Long Covid has been described as "relapsing and remitting" [20], whereby 86% of people with Long Covid report relapses over 7 months, with physical activity, stress, exercise and mental activity being the most common triggers of relapses [17]. The trajectory of Long Covid is heterogenous with some improving over time, some worsening and others stable, with many experiencing ongoing fluctuating symptoms after 6 months [17].

Long Covid Prevalence[edit | edit source]

Estimating the prevalence of Long Covid symptoms poses several challenges due to current lack of consensus definition and limited data collection in national surveys. The COVID-19 Infection Survey [30] is a nationally representative sample of the UK community population, from which it is has been estimated that around 1 in 5 people exhibit Long Covid symptoms for 5 weeks or longer, and around 1 in 10 exhibit Long Covid symptoms for 12 weeks or longer [7].

Pathological Process[edit | edit source]

The aetiology and pathophysiological causes of Long Covid symptoms remains unknown, due to insufficient evidence. Initial hypothesis include: viral persistence [31][32][33][34], continued hyperactive immune response [35][36], cellular metabolic dysfunction [37], auto-antibodies [38][39], and organ impairment [25]. More research is required.

Long Covid Management[edit | edit source]

The National Institute for Health and Care Excellence (NICE) published a rapid guideline on managing Long Covid [16], which covers identifying, assessing and managing Long Covid across all health care settings for adults, children and young people who have ongoing symptoms 4 weeks or more after the start of acute COVID-19. The novel nature of Long Covid has resulted in urgent calls for more research to fill existing gaps in knowledge [40].

Outcome Measures[edit | edit source]

The National Institute for Health Research (NIHR) has encouraged the use of the International Classification of Functioning Disability and Health (ICF) to provide a framework and standard language for the description of health and health-related state, due to current insufficient evidence to provide guidance [14]. The ICF has been operationalised into the ICF Browser, ICF Checklist, and World Health Organization Disability Assessment Schedule (WHODAS) 2.0.

Some studies have performed a level of functional assessment, including the new "Post-COVID-19 Functional Status Assessment" (PCFS) [41][42][43] and "COVID-19 Yorkshire Rehabilitation Scale" (C19-YRS)[44][45][46], sit-to-stand tests [43][47] , gait speed tests [43][48][49][50][51], modified Rankin Score [52], and SF-36 questionnaire [47].

Management / Interventions[edit | edit source]

There is currently insufficient evidence on safe and effective interventions for management of Long Covid symptoms and impairments or disability.

The National Institute for Health and Care Excellence (NICE) has cautioned against the use of graded exercise therapy (GET) for managing post-viral fatigue [53], in responce to draft guidance updates on the management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) [54][55]. Substantial concerns exist regarding the potential for harm in respect to GET as an intervention for ME/CFS [56]. Post-exertion malaise is a symptom experienced by people living with ME/CFS [57], and is characterised as the worsening of symptoms by exertion including physical, cognitive and emotional activities [58][59][60], which would prohibit exercise interventions. Among a sample of 3,762 people living with Long Covid, post-exertion malaise was reported by 72.2%, plus exercise is a common trigger for symptom relapses [17] warranting caution with exercise as a rehabilitation intervention for Long Covid and people living with COVID-19.

Groups representing people living with Long Covid have advocated for a risk stratification approach to exercise as a rehabilitation intervention. A focus is needed on assessing and excluding post-exertion malaise [61][62], plus screening for potential cardiac involvement [63] due to 32% prevalence of cardiac impairment among a young and low-risk population of people living with Long Covid and persistent symptoms [25].

The National Health Service (NHS) provides free online self-management rehabilitation for people recovering from COVID-19 called "Your COVID Recovery".

Mount Sinai Long Covid Recovery programme provides free online breath-work for Long Covid called "STASIS".

The National Institute for Health Research (NIHR) recently funded a research award for the Rehabilitation Exercise and psycholoGical support After covid-19 InfectioN (REGAIN) study [64].

Activity management or pacing is likely to be a safe and effective intervention for managing fatigue and post-exertion malaise. Heart rate monitoring is likely to be a safe and effective intervention for managing fatigue and post exertion malaise [65][66]. Useful resources on pacing are provided below:

Peer Support[edit | edit source]

Peer support involves people sharing knowledge, experience, or practical help with each other, often when living with the same or similar health conditions. Many online Long Covid peer support groups have been established for people living with Long Covid. These are safe spaces for people living with Long Covid to access peer support, therefore mutual respect and confidentiality is requested. Many of these groups have outputs to share valuable information with allies. Long Covid groups include:

References[edit | edit source]

  1. ↑ World Health Organization. Naming the coronavirus disease (COVID-19) and the virus that causes it. Available from: www.who.int/emergencies/diseases/novel-coronavirus-2019/technical-guidance/naming-the-coronavirus-disease-(covid-2019)-and-the-virus-that-causes-it (accessed 7 January 2021).
  2. ↑ 2.0 2.1 https://www.nice.org.uk/guidance/gid-ng10179/documents/final-scope
  3. ↑ 3.0 3.1 BMJ. Why we need to keep using the patient made term “Long Covid”. The BMJ Opinion. Weblog. [Online] Available from: https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/ [Accessed 7 January 2021].
  4. ↑ 4.0 4.1 Callard F, Perego E. How and why patients made Long Covid. Social Science & Medicine. 2020;268:113426.
  5. ↑ Nature. Long COVID: let patients help define long-lasting COVID symptoms. Available from: https://www.nature.com/articles/d41586-020-02796-2 (accessed 7 January 2021).
  6. ↑ 6.0 6.1 The BMJ. NICE guideline on long covid. Available from: https://www.bmj.com/content/371/bmj.m4938 (accessed 7 January 2021).
  7. ↑ 7.0 7.1 Office for National Statistics. The prevalence of long COVID symptoms and COVID-19 complications. Available from: https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications (accessed 7 January 2021)
  8. ↑ Nath A. Long-Haul COVID. Neurology. 2020;95(13):559-560.
  9. ↑ Nature. The lasting misery of coronavirus long-haulers. Available from: https://www.nature.com/articles/d41586-020-02598-6 (accessed 7 January 2021).
  10. ↑ Baig AM. Chronic COVID Syndrome: Need for An Appropriate Medical Terminology for Long‐COVID and COVID Long‐Haulers. Journal of Medical Virology. 2020;Oct 23.
  11. ↑ Goërtz YMJ, Herck MV, Delbressine JM, Vaes AW, Meys R et al. Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?. ERJ Open Research. 2020;6(4):1-10.
  12. ↑ 12.0 12.1 NHS, National Guidance for Post-COVID Syndrome Assessment Clinics. 2020. Available from:https://www.england.nhs.uk/coronavirus/publication/national-guidance-for-post-covid-syndrome-assessment-clinics/ [Accessed 7th January 2021].
  13. ↑ https://www.bmj.com/content/370/bmj.m3026
  14. ↑ 14.0 14.1 14.2 National Institute of Health Research. Living with Covid19. Available from:https://evidence.nihr.ac.uk/themedreview/living-with-covid19/ (accessed 7 January 2021).
  15. ↑ Watson S, Namiba A, Lynn V. The language of HIV: a guide for nurses. HIV Nursing. 2019;19(2):BP1-4.
  16. ↑ 16.0 16.1 16.2 https://www.nice.org.uk/guidance/ng188
  17. ↑ 17.0 17.1 17.2 17.3 17.4 17.5 17.6 17.7 17.8 https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2.full.pdf
  18. ↑ https://www.medrxiv.org/content/10.1101/2020.12.08.20246025v1
  19. ↑ https://jamanetwork.com/journals/jama/fullarticle/2768351
  20. ↑ 20.0 20.1 https://patientresearchcovid19.com/research/report-1/
  21. ↑ https://www.journalofinfection.com/article/S0163-4453(20)30762-3/fulltext
  22. ↑ https://www.nice.org.uk/guidance/ng188/chapter/common-symptoms-of-ongoing-symptomatic-covid-19-and-post-covid-19-syndrome#common-symptoms-of-ongoing-symptomatic-covid-19-and-post-covid-19-syndrome
  23. ↑ https://www.medrxiv.org/content/10.1101/2020.11.04.20226126v1
  24. ↑ https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/late-sequelae.html
  25. ↑ 25.0 25.1 25.2 https://www.medrxiv.org/content/10.1101/2020.10.14.20212555v1
  26. ↑ https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm
  27. ↑ https://www.acpjournals.org/doi/10.7326/M20-5926
  28. ↑ https://www.medrxiv.org/content/10.1101/2020.10.19.20214494v2
  29. ↑ https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0240784
  30. ↑ https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/coronaviruscovid19infectionsurveypilot/previousReleases
  31. ↑ https://www.nature.com/articles/s41423-020-00550-2
  32. ↑ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7654855/
  33. ↑ https://www.biorxiv.org/content/10.1101/2020.11.18.388819v1.full
  34. ↑ https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(20)30480-1/fulltext
  35. ↑ https://www.ijidonline.com/article/S1201-9712(20)30732-3/fulltext
  36. ↑ https://www.medrxiv.org/content/10.1101/2020.10.21.20216192v2
  37. ↑ https://www.sciencedirect.com/science/article/pii/S0306987720314742?via%3Dihub
  38. ↑ https://ard.bmj.com/content/79/12/1661
  39. ↑ https://www.medrxiv.org/content/10.1101/2020.12.10.20247205v3
  40. ↑ https://www.bmj.com/content/370/bmj.m2912
  41. ↑ https://erj.ersjournals.com/content/56/1/2001494
  42. ↑ https://www.medrxiv.org/content/10.1101/2020.08.26.20182618v1
  43. ↑ 43.0 43.1 43.2 https://openres.ersjournals.com/content/early/2020/10/15/23120541.00655-2020
  44. ↑ https://www.acnr.co.uk/wp-content/uploads/2020/06/C19-YRS-Covid-Rehab-screening-tool.pdf
  45. ↑ https://onlinelibrary.wiley.com/doi/10.1002/jmv.26368
  46. ↑ https://link.springer.com/article/10.1007/s40520-020-01685-y
  47. ↑ 47.0 47.1 https://www.medrxiv.org/content/10.1101/2020.08.12.20173526v1
  48. ↑ https://www.medrxiv.org/content/10.1101/2020.10.15.20205054v1
  49. ↑ https://www.resmedjournal.com/article/S0954-6111(20)30337-1/fulltext
  50. ↑ https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-020-01429-6
  51. ↑ https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-020-01546-2
  52. ↑ https://www.medrxiv.org/content/10.1101/2020.10.16.20211029v1
  53. ↑ https://www.bmj.com/content/370/bmj.m2912
  54. ↑ https://www.nice.org.uk/news/article/nice-draft-guidance-addresses-the-continuing-debate-about-the-best-approach-to-the-diagnosis-and-management-of-me-cfs
  55. ↑ https://www.nice.org.uk/guidance/indevelopment/gid-ng10091
  56. ↑ https://www.dialogues-mecfs.co.uk/films/graded-exercise-therapy/
  57. ↑ https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
  58. ↑ https://www.frontiersin.org/articles/10.3389/fneur.2020.01025/full
  59. ↑ https://meassociation.org.uk/wp-content/uploads/MEA-Research-Review-Assessing-PEM-in-MECFS-25.03.19.pdf?fbclid=IwAR1iT9TOYyOfdofaTsflQRdxkg_VEjY-0wFMOCLJJ9l8ZGQ1dgL3EI-MCeA.
  60. ↑ https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0197811
  61. ↑ https://www.mdpi.com/2075-4418/9/1/26
  62. ↑ https://www.frontiersin.org/articles/10.3389/fped.2018.00330/full
  63. ↑ https://www.sciencedirect.com/science/article/abs/pii/S1936878X20309098
  64. ↑ https://www.fundingawards.nihr.ac.uk/award/NIHR132046
  65. ↑ https://www.physiosforme.com/heart-rate-monitoring
  66. ↑ https://www.physiosforme.com/post/new-podcast-heart-rate-monitoring

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