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<div class="editorbox"> '''Original Editor '''- [[User:Darren Brown|Darren Brown]] a member of the peer support group [https://twitter.com/LongCovidPhysio LongCovidPhysio]  <br>
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'''Original Editor '''- [[User:Darren Brown|Darren Brown]]  
'''Top Contributors''' - {{Special:Contributors/{{FULLPAGENAME}}}}&nbsp; 
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  '''Top Contributors''' - {{Special:Contributors/{{FULLPAGENAME}}}}</div>
== Introduction ==
Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is the virus that causes coronavirus disease (COVID-19) <ref>World Health Organization. Naming the coronavirus disease (COVID-19) and the virus that causes it. Availabe from: https://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]</ref>. The effects of COVID-19 have been characterised across different time points:
* 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.<ref name=":1">National Institute for Health and Care Excellence (NICE), COVID-19 guideline scope: management of the long-term effects of COVID-19. 2020. Available from: https://www.nice.org.uk/guidance/ng188/documents/final-scope [Accessed 7 January 2021].</ref>
 
<nowiki>**</nowiki> The name Long COVID acknowledges that the 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 people's experiences, draws attention to morbidity, and centres people with disability.<ref name=":0">Perego E, Callard F, Stras L, Melville-Johannesson B, Pope R, Alwan N. Why we need to keep using the patient made term “Long Covid. BMJ Opinion. 2020.</ref>  
 
"People call Long COVID by many names, including post-COVID conditions, long-haul COVID, post-acute COVID-19, long-term effects of COVID, and chronic COVID."<ref>Long COVID or Post-COVID Conditions. Updated Dec. 16, 2022. Centres for Disease Control and Prevention. Available From: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html </ref> 
== What is Long COVID? ==
Long Covid has been preliminarily defined 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).<ref name=":4">National Institute for Health and Care Excellence (NICE). COVID-19 Rapid Guideline: Managing The Long-term Effects of COVID-19. 2020. Available From: https://www.nice.org.uk/guidance/ng188 [Accessed 8 January 2021].</ref>
 
Long COVID affects people who have been hospitalised with acute COVID-19 and those who managed in a community setting. There is growing evidence to suggest that individuals who have had both mild or severe COVID-19 can experience prolonged symptoms or develop Long COVID.<ref>Public Health England. COVID-19: epidemiology, virology and clinical features. 2021.
</ref><ref>Townsend L, Dowds J, O'Brien K, Sheill G, Dyer AH, O'Kelly B, Hynes JP, Mooney A, Dunne J, Ni Cheallaigh C, O'Farrelly C, Bourke NM, Conlon N, Martin-Loeches I, Bergin C, Nadarajan P, Bannan C. Persistent Poor Health after COVID-19 Is Not Associated with Respiratory Complications or Initial Disease Severity. Ann Am Thorac Soc. 2021;18(6):997-1003. 
</ref><ref>Graham EL, Clark JR, Orban ZS, Lim PH, Szymanski AL, Taylor C, DiBiase RM, Jia DT, Balabanov R, Ho SU, Batra A, Liotta EM, Koralnik IJ. Persistent neurologic symptoms and cognitive dysfunction in non-hospitalized Covid-19 "long haulers". Ann Clin Transl Neurol. 2021;8(5):1073-1085. 
</ref><ref>Brodin P. Immune determinants of COVID-19 disease presentation and severity. Nature Medicine, 2021;27:28–33.
</ref><ref name=":25" /><ref>Augustin M, Schommers P, Stecher M, Dewald F, Gieselmann L, Gruell H, Horn C, Vanshylla K, Cristanziano VD, Osebold L, Roventa M. Recovered not restored: Long-term health consequences after mild COVID-19 in non-hospitalized patients. MedRxiv. 2021;2021-03.
</ref><ref name=":22" /><ref>Evans RA, McAuley H, Harrison EM, Shikotra A, Singapuri A, Sereno M, Elneima O, Docherty AB, Lone NI, Leavy OC, Daines L, Baillie JK, Brown JS, Chalder T, De Soyza A, Diar Bakerly N, Easom N, Geddes JR, Greening NJ, Hart N, Heaney LG, Heller S, Howard L, Hurst JR, Jacob J, Jenkins RG, Jolley C, Kerr S, Kon OM, Lewis K, Lord JM, McCann GP, Neubauer S, Openshaw PJM, Parekh D, Pfeffer P, Rahman NM, Raman B, Richardson M, Rowland M, Semple MG, Shah AM, Singh SJ, Sheikh A, Thomas D, Toshner M, Chalmers JD, Ho LP, Horsley A, Marks M, Poinasamy K, Wain LV, Brightling CE. Physical, cognitive, and mental health impacts of COVID-19 after hospitalisation (PHOSP-COVID): a UK multicentre, prospective cohort study. Lancet Respir Med. 2021;9(11):1275-1287.
</ref><ref name=":9" /> Long COVID is both common and debilitating.<ref name=":23">Rajan S, Khunti K, Alwan N, Steves C, MacDermott N, Morsella A, Angulo E, Winkelmann J, Bryndová L, Fronteira I, Gandré C, Or Z, Gerkens S, Sagan A, Simões J, Ricciardi W, de Belvis AG, Silenzi A, Bernal-Delgado E, Estupiñán-Romero F, McKee M. In the wake of the pandemic: Preparing for Long COVID [Internet]. Copenhagen (Denmark): European Observatory on Health Systems and Policies; 2021. PMID: 33877759. </ref>  


== Introduction ==
As of October 2021, the [https://www.who.int/publications/i/item/WHO-2019-nCoV-Post_COVID-19_condition-Clinical_case_definition-2021.1 World Health Organization (WHO)] has developed a case definition of post COVID-19 condition.  
Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is the virus that causes coronavirus disease (COVID-19) <ref>World Health Organization. [https://www.who.int/emergencies/diseases/novel-coronavirus-2019/technical-guidance/naming-the-coronavirus-disease-(covid-2019)-and-the-virus-that-causes-it Naming the coronavirus disease (COVID-19) and the virus that causes it].  [Accessed 7 January 2021]</ref>. The effects of COVID-19 have been characterised across different time points:
* 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.<ref name=":1">National Institute for Health and Care Excellence (NICE), [https://www.nice.org.uk/guidance/ng188/documents/final-scope COVID-19 guideline scope: management of the long-term effects of COVID-19]. 2020 [Accessed 7th January 2021].</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">Perego E, Callard F, Stras L, Melville-Johannesson B, Pope R, Alwan N. [https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/ Why we need to keep using the patient made term “Long Covid]. BMJ Opinion. 2020 Oct 1[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. [https://www.nature.com/articles/d41586-020-02796-2 Long COVID: let patients help define long-lasting COVID symptoms]. 2020 October 7 [Accessed 7 January 2021].</ref><ref name=":3">The BMJ. [https://www.bmj.com/content/371/bmj.m4938 NICE guideline on long covid]. 2020 December 23 [Accessed 7 January 2021].</ref><ref name=":7">Office for National Statistics. [https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications The prevalence of long COVID symptoms and COVID-19 complications]. [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. [https://www.nature.com/articles/d41586-020-02598-6 The lasting misery of coronavirus long-haulers]. 2020 September 14 [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, [https://www.england.nhs.uk/coronavirus/publication/national-guidance-for-post-covid-syndrome-assessment-clinics/ National Guidance for Post-COVID Syndrome Assessment Clinics]. 2020 November 6 [Accessed 7th January 2021].</ref>, "Post-Acute COVID-19" <ref>Greenhalgh T, Knight M, Buxton M, Husain L. [https://www.bmj.com/content/370/bmj.m3026 Management of Post-acute Covid-19 in Primary Care]. BMJ. 2020;370:1-8.</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. [https://evidence.nihr.ac.uk/themedreview/living-with-covid19/ Living with Covid19]. 2020 October 15 [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>.   
''"Post-COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others* and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time."''<ref>WHO Diaz JV, Soriano JB. A Delphi consensus to advance on a Clinical Case Definition for Post COVID-19 condition: A WHO protocol. 2021. Available from: https://apps.who.int/iris/bitstream/handle/10665/345824/WHO-2019-nCoV-Post-COVID-19-condition-Clinical-case-definition-2021.1-eng.pdf [Accessed 11th October 2021]</ref>


== What is Long Covid? ==
== Long COVID Symptoms ==
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) <ref name=":4">https://www.nice.org.uk/guidance/ng188</ref>.
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. <ref name=":23" /><ref name=":4" /><ref name=":5">Davis HE, Assaf GS, McCorkell L, Wei H, Low RJ, Re'em Y, Redfield S, Austin JP, Akrami A. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine. 2021;38:101019.</ref><ref name=":18">Carfì A, Bernabei R, Landi F. Persistent Symptoms in Patients After Acute COVID-19. ''JAMA''. 2020;324(6):603-605.</ref><ref name=":6">Assaf G, Davis H, McCorkell L, Wei H, Brooke O', Akrami A, Low R, Mercier J, Adetutu A. Report: What Does COVID-19 Recovery Look Like? An analysis of the prolonged COVID-19 symptoms survey by Patient-Led Research Team. Patient-Led Research [online]. Patient-Led Research. 2020.
</ref><ref>Salmon-Ceron D, Slama D, Broucker TD. Clinical, virological and imaging profile in patients with prolonged forms of COVID-19: A cross-sectional study. J Infect. 2020.</ref><ref name=":14">Huang C, Huang L, Wang Y, Li X, Ren L, Gu X, Kang L, Guo L, Liu M, Zhou X, Luo J, Huang Z, Tu S, Zhao Y, Chen L, Xu D, Li Y, Li C, Peng L, Li Y, Xie W, Cui D, Shang L, Fan G, Xu J, Wang G, Wang Y, Zhong J, Wang C, Wang J, Zhang D, Cao B. 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study. Lancet. 2021 Jan 16;397(10270):220-232. </ref> including, but not limited to pulmonary, cardiovascular, gastrointestinal, reproductive, genitourinary, endocrine, renal, dermatologic, musculoskeletal, neurological, neuropsychiatric, immunological, ophthalmic, and audiological.<ref name=":5" /> 


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 <ref name=":8" />:
The most common Long Covid symptom is fatigue.<ref name=":5" /><ref name=":18" /><ref>Tabacof L, Tosto-Mancuso J, Wood J, Cortes M, Kontorovich A, McCarthy D, Rizk D, Nasr L, Breyman E, Mohammadi N, Kellner C. Post-acute COVID-19 syndrome negatively impacts health and wellbeing despite less severe acute infection. medRxiv. 2020.</ref><ref>Centers for Disease Control and Prevention. Late Sequelae of COVID-19. 2020. Available from: https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/late-sequelae.html. [Accessed 8th January 2021].</ref><ref name=":9">Dennis A, Wamil M, Alberts J, Oben J, Cuthbertson DJ, Wootton D, Crooks M, Gabbay M, Brady M, Hishmeh L, Attree E, Heightman M, Banerjee R, Banerjee A; COVERSCAN study investigators. Multiorgan impairment in low-risk individuals with post-COVID-19 syndrome: a prospective, community-based study. BMJ Open. 2021;11(3).</ref><ref>Tenforde MW, Kim SS, Lindsell CJ, Rose EB, Shapiro NI, Files DC, Gibbs KW, Erickson HL, Steingrub JS, Smithline HA, Gong MN. Symptom duration and risk factors for delayed return to usual health among outpatients with COVID-19 in a multistate health care systems network—United States, March–June 2020. Morbidity and Mortality Weekly Report. 2020;69(30):993.</ref><ref>Nehme M, Braillard O, Alcoba G, Aebischer Perone S, Courvoisier D, Chappuis F, Guessous I. COVID-19 Symptoms: Longitudinal Evolution and Persistence in Outpatient Settings. Annals of Internal Medicine. 2020.</ref><ref>Sudre CH, Murray B, Varsavsky T, Graham MS, Penfold RS, Bowyer RC, Pujol JC, Klaser K, Antonelli M, Canas LS, Molteni E. Attributes and predictors of Long-COVID. Nature Medicine 2021. </ref><ref name=":25">Townsend L, Dyer AH, Jones K, Dunne J, Mooney A, Gaffney F, O'Connor L, Leavy D, O'Brien K, Dowds J, Sugrue JA. Persistent fatigue following SARS-CoV-2 infection is common and independent of the severity of initial infection. Plos One. 2020;9:15(11).</ref><ref>Lopez-Leon S, Wegman-Ostrosky T, Perelman C, Sepulveda R, Rebolledo PA, Cuapio A, Villapol S. More than 50 Long-term effects of COVID-19: a systematic review and meta-analysis. medRxiv [Preprint]. 2021.
* post-intensive care 
</ref><ref>Lopez-Leon S, Wegman-Ostrosky T, Perelman C, Sepulveda R, Rebolledo PA, Cuapio A, Villapol S. More than 50 Long-term effects of COVID-19: a systematic review and meta-analysis. medRxiv [Preprint]. 2021.</ref><ref>Garrigues E, Janvier P, Kherabi Y, Le Bot A, Hamon A, Gouze H, Doucet L, Berkani S, Oliosi E, Mallart E, Corre F, Zarrouk V, Moyer JD, Galy A, Honsel V, Fantin B, Nguyen Y. Post-discharge persistent symptoms and health-related quality of life after hospitalization for COVID-19. J Infect. 2020;81(6):e4-e6.
* post-viral fatigue
</ref><ref name=":19" /><ref name=":20">Moreno-Pérez O, Merino E, Leon-Ramirez JM, Andres M, Ramos JM, Arenas-Jiménez J, Asensio S, Sanchez R, Ruiz-Torregrosa P, Galan I, Scholz A, Amo A, González-delaAleja P, Boix V, Gil J; COVID19-ALC research group. Post-acute COVID-19 syndrome. Incidence and risk factors: A Mediterranean cohort study. J Infect. 2021;82(3):378-383.
* permanent organ damage
</ref><ref name=":21">Munblit D, Bobkova P, Spiridonova E, Shikhaleva A, Gamirova A, Blyuss O, Nekliudov N, Bugaeva P, Andreeva M, DunnGalvin A, Comberiati P, Apfelbacher C, Genuneit J, Avdeev S, Kapustina V, Guekht A, Fomin V, Svistunov AA, Timashev P, Subbot VS, Royuk VV, Drake TM, Hanson SW, Merson L, Carson G, Horby P, Sigfrid L, Scott JT, Semple MG, Warner JO, Vos T, Olliaro P, Glybochko P, Butnaru D. Incidence and risk factors for persistent symptoms in adults previously hospitalized for COVID-19. Clin Exp Allergy. 2021;51(9):1107-1120.</ref><ref name=":22">Logue JK, Franko NM, McCulloch DJ, McDonald D, Magedson A, Wolf CR, Chu HY. Sequelae in Adults at 6 Months After COVID-19 Infection. JAMA Netw Open. 2021;1:4(2).
* long-term COVID  
</ref><ref name=":24">Menges D, Ballouz T, Anagnostopoulos A, Aschmann HE, Domenghino A, Fehr JS, Puhan MA. The burden of the post-COVID-19 syndrome and implications for healthcare service planning: A population-based cohort study. PLoS One. 2021;12:16(7).
Consensus has not yet been reached on a Long Covid case definition <ref name=":3" /><ref name=":5">https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2.full.pdf</ref><ref>https://www.medrxiv.org/content/10.1101/2020.12.08.20246025v1</ref>, however attempts have been made to characterise Long Covid as prolonged with multi-system involvement and significant disability <ref name=":5" />.  
</ref><ref>Osikomaiya B, Erinoso O, Wright KO, Odusola AO, Thomas B, Adeyemi O, Bowale A, Adejumo O, Falana A, Abdus-Salam I, Ogboye O, Osibogun A, Abayomi A. 'Long COVID': persistent COVID-19 symptoms in survivors managed in Lagos State, Nigeria. BMC Infect Dis. 2021;21(1):304.
</ref> The most frequently reported Long COVID symptoms after 6 months include fatigue, post-exertion malaise, and cognitive dysfunction.<ref name=":5" /> Mental health symptoms associated with long COVID include anxiety (28% increase), increased presence of depression (13% increase), PTSD (20% increase), suicide ideation (10% increase) and decreased life satisfaction and daily functioning. Researchers and patients have distinguished more than 200 symptoms associated with long COVID.<ref name=":2">Thaweethai T, Jolley SE, Karlson EW, Levitan EB, Levy B, McComsey GA, McCorkell L, Nadkarni GN, Parthasarathy S, Singh U, Walker TA. Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection. JAMA. 2023;''329(22):1934-1946.''</ref> The most common symptoms include:


== Long Covid Symptoms ==
* tiredness
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 <ref name=":4" /><ref name=":5" /><ref>https://jamanetwork.com/journals/jama/fullarticle/2768351</ref><ref name=":6">https://patientresearchcovid19.com/research/report-1/</ref><ref>https://www.journalofinfection.com/article/S0163-4453(20)30762-3/fulltext</ref>. 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 <ref name=":5" />. A list of common Long Covid symptoms is provided by The National Institute for Health and Care Excellence (NICE) <ref>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</ref>
* brain fog
* cough
* loss of smell or change in taste
* fever
* body aches
* trouble sleeping
* mood changes<ref>RECOVER: Researching COVID to Enhance Recovery. The National Institutes of Health. 2023.  Available from:https://recovercovid.org/</ref>


The most common Long Covid symptom is fatigue <ref name=":5" /><ref>https://www.medrxiv.org/content/10.1101/2020.11.04.20226126v1</ref><ref>https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/late-sequelae.html</ref><ref name=":9">https://www.medrxiv.org/content/10.1101/2020.10.14.20212555v1</ref><ref>https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm</ref><ref>https://www.acpjournals.org/doi/10.7326/M20-5926</ref><ref>https://www.medrxiv.org/content/10.1101/2020.10.19.20214494v2</ref><ref>https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0240784</ref>. The most frequently reported Long Covid symptoms after 6 months include fatigue, post-exertion malaise, and cognitive dysfunction <ref name=":5" />. The multidimensional, episodic and often unpredictable nature of Long Covid has been described as "relapsing and remitting" <ref name=":6" />, 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 <ref name=":5" />. 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 <ref name=":5" />.
The multidimensional, episodic and often unpredictable nature of Long COVID has been described as "relapsing and remitting",<ref name=":6" /> 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.<ref name=":5" /> 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.<ref name=":5" /><ref name=":27">Sigfrid L, Drake TM, Pauley E, Jesudason EC, Olliaro P, Lim WS, Gillesen A, Berry C, Lowe DJ, McPeake J, Lone N, Munblit D, Cevik M, Casey A, Bannister P, Russell CD, Goodwin L, Ho A, Turtle L, O'Hara ME, Hastie C, Donohue C, Spencer RG, Donegan C, Gummery A, Harrison J, Hardwick HE, Hastie CE, Carson G, Merson L, Baillie JK, Openshaw P, Harrison EM, Docherty AB, Semple MG, Scott JT. Long Covid in adults discharged from UK hospitals after Covid-19: A prospective, multicentre cohort study using the ISARIC WHO Clinical Characterisation Protocol. Lancet Reg Health Eur. 2021;8:100186. </ref> Furthermore, outcomes are worse in working-age females than males, with females under 50 being over five times more likely to report incomplete recovery, over five times more likely to report a new disability, more likely to have severe fatigue, and more than six times more likely to report increased breathlessness than males under 50.<ref name=":27" /> It is estimated that 30% of people not hospitalised with "mild" acute symptoms, continue to have symptoms 9 months after infection.<ref name=":22" /> Preliminary evidence suggests children also experience Long COVID symptoms similar to adults.<ref>Buonsenso D, Munblit D, De Rose C, Sinatti D, Ricchiuto A, Carfi A, Valentini P. Preliminary evidence on long COVID in children. Acta Paediatr. 2021;110(7):2208-2211.
</ref>{{#ev:youtube|9fogPLrZoQc}}<ref>Darren Brown for Long COVID Physio. What are common Long COVID symptoms? Available from https://youtu.be/9fogPLrZoQc [last accessed 22 March 2022]</ref>
== Long COVID Prevalence ==
The COVID-19 Infection Survey<ref>Office for National Statistics. Coronavirus (COVID-19) Infection Survey, UK Statistical bulletins. Available from:https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/coronaviruscovid19infectionsurveypilot/previousReleases [Accessed 8th January 2021].</ref> is a nationally representative sample of the UK community population, from which it 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.<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 7th January 2021].</ref><ref>Office for National Statistics. Updated estimates of the prevalence of long COVID symptoms. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/2february2023 [Accessed 21st January 2021].  
</ref>  


== Long Covid Prevalence ==
Researchers have determined that Long COVID is more severe and common in individuals infected before the Omicron variant in 2021 and those who were unvaccinated. Additionally, reinfections were related to higher Long COVID severity and frequency compared to people who were only infected once.<ref name=":2" />
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 <ref>https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/coronaviruscovid19infectionsurveypilot/previousReleases</ref> 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 <ref name=":7" />.


== Pathological Process  ==
== Pathological Process  ==


The aetiology and pathophysiological causes of Long Covid symptoms remains unknown, due to insufficient evidence. Initial hypothesis include: viral persistence <ref>https://www.nature.com/articles/s41423-020-00550-2</ref><ref>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7654855/</ref><ref>https://www.biorxiv.org/content/10.1101/2020.11.18.388819v1.full</ref><ref>https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(20)30480-1/fulltext</ref>, continued hyperactive immune response <ref>https://www.ijidonline.com/article/S1201-9712(20)30732-3/fulltext</ref><ref>https://www.medrxiv.org/content/10.1101/2020.10.21.20216192v2</ref>, cellular metabolic dysfunction <ref>https://www.sciencedirect.com/science/article/pii/S0306987720314742?via%3Dihub</ref>, auto-antibodies <ref>https://ard.bmj.com/content/79/12/1661</ref><ref>https://www.medrxiv.org/content/10.1101/2020.12.10.20247205v3</ref>, and organ impairment <ref name=":9" />. More research is required. <br>  
The aetiology and pathophysiological causes of Long COVID symptoms remain unknown. Initial hypothesis includes: viral persistence,<ref>Hu F, Chen F, Ou Z, Fan Q, Tan X, Wang Y, Pan Y, Ke B, Li L, Guan Y, Mo X. A compromised specific humoral immune response against the SARS-CoV-2 receptor-binding domain is related to viral persistence and periodic shedding in the gastrointestinal tract. Cellular & molecular immunology. 2020;17(11):1119-25.</ref><ref>Gaebler C, Wang Z, Lorenzi JCC, Muecksch F, Finkin S, Tokuyama M, Cho A, Jankovic M, Schaefer-Babajew D, Oliveira TY, Cipolla M, Viant C, Barnes CO, Bram Y, Breton G, Hägglöf T, Mendoza P, Hurley A, Turroja M, Gordon K, Millard KG, Ramos V, Schmidt F, Weisblum Y, Jha D, Tankelevich M, Martinez-Delgado G, Yee J, Patel R, Dizon J, Unson-O'Brien C, Shimeliovich I, Robbiani DF, Zhao Z, Gazumyan A, Schwartz RE, Hatziioannou T, Bjorkman PJ, Mehandru S, Bieniasz PD, Caskey M, Nussenzweig MC. Evolution of antibody immunity to SARS-CoV-2. Nature. 2021;591(7851):639-644.</ref><ref>Gaebler C, Wang Z, Lorenzi JCC, Muecksch F, Finkin S, Tokuyama M, Cho A, Jankovic M, Schaefer-Babajew D, Oliveira TY, Cipolla M, Viant C, Barnes CO, Bram Y, Breton G, Hägglöf T, Mendoza P, Hurley A, Turroja M, Gordon K, Millard KG, Ramos V, Schmidt F, Weisblum Y, Jha D, Tankelevich M, Martinez-Delgado G, Yee J, Patel R, Dizon J, Unson-O'Brien C, Shimeliovich I, Robbiani DF, Zhao Z, Gazumyan A, Schwartz RE, Hatziioannou T, Bjorkman PJ, Mehandru S, Bieniasz PD, Caskey M, Nussenzweig MC. Evolution of antibody immunity to SARS-CoV-2. Nature. 2021;591(7851):639-644.</ref><ref>Bussani R, Schneider E, Zentilin L, Collesi C, Ali H, Braga L, Volpe MC, Colliva A, Zanconati F, Berlot G, Silvestri F, Zacchigna S, Giacca M. Persistence of viral RNA, pneumocyte syncytia and thrombosis are hallmarks of advanced COVID-19 pathology. EBioMedicine. 2020;61:103104.</ref> continued hyperactive immune response,<ref>Afrin LB, Weinstock LB, Molderings GJ. Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome. International Journal of Infectious Diseases. 2020;100:327-32.</ref><ref>Woodruff MC, Ramonell RP, Lee FE, Sanz I. Clinically identifiable autoreactivity is common in severe SARS-CoV-2 Infection. medRxiv. 2020.</ref><ref>Patterson BK, Guevara-Coto J, Yogendra R, Francisco EB, Long E, Pise A, Rodrigues H, Parikh P, Mora J, Mora-Rodríguez RA. Immune-Based Prediction of COVID-19 Severity and Chronicity Decoded Using Machine Learning. Front Immunol. 2021;12:700782.
</ref> cellular metabolic dysfunction,<ref>Miller R, Wentzel AR, Richards GA. COVID-19: NAD+ deficiency may predispose the aged, obese and type2 diabetics to mortality through its effect on SIRT1 activity. Medical Hypotheses. 2020;144:110044.</ref> auto-antibodies,<ref>Vlachoyiannopoulos PG, Magira E, Alexopoulos H, Jahaj E, Theophilopoulou K, Kotanidou A, Tzioufas AG. Autoantibodies related to systemic autoimmune rheumatic diseases in severely ill patients with COVID-19. Annals of the Rheumatic Diseases. 2020;79(12):1661-3.</ref><ref>Wang EY, Mao T, Klein J, Dai Y, Huck JD, Liu F, Zheng NS, Zhou T, Israelow B, Wong P, Lucas C. Diverse Functional Autoantibodies in Patients with COVID-19. medRxiv. 2020.</ref> neurological dysfunction,<ref>Shin Jie Yong. Persistent Brainstem Dysfunction in Long-COVID: A Hypothesis. ''ACS Chem. Neurosci.'' 2021; 573–580.</ref><ref>Guedj E, Campion JY, Dudouet P, Kaphan E, Bregeon F, Tissot-Dupont H, Guis S, Barthelemy F, Habert P, Ceccaldi M, Million M, Raoult D, Cammilleri S, Eldin C. <sup>18</sup>F-FDG brain PET hypometabolism in patients with long COVID. Eur J Nucl Med Mol Imaging. 2021;48(9):2823-2833.
</ref><ref>Nauen DW, Hooper JE, Stewart CM, Solomon IH. Assessing Brain Capillaries in Coronavirus Disease 2019. JAMA Neurol. 2021;78(6):760-762.
</ref><ref>Boldrini M, Canoll PD, Klein RS. How COVID-19 Affects the Brain. JAMA Psychiatry. 2021;78(6):682-683.
</ref> neuroimmunology,<ref>Mondelli V, Pariante CM. What can neuroimmunology teach us about the symptoms of long-COVID? Oxf Open Immunol. 2021;10:2(1).  
</ref> neurological inflammation,<ref>Remsik J, Wilcox JA, Babady NE, McMillen TA, Vachha BA, Halpern NA, Dhawan V, Rosenblum M, Iacobuzio-Donahue CA, Avila EK, Santomasso B, Boire A. Inflammatory Leptomeningeal Cytokines Mediate COVID-19 Neurologic Symptoms in Cancer Patients. Cancer Cell. 2021;39(2):276-283.
</ref> and organ impairment,<ref name=":9" /> including cardiac impairment.<ref name=":9" /><ref>Puntmann VO, Carerj ML, Wieters I, Fahim M, Arendt C, Hoffmann J, Shchendrygina A, Escher F, Vasa-Nicotera M, Zeiher AM, Vehreschild M, Nagel E. Outcomes of Cardiovascular Magnetic Resonance Imaging in Patients Recently Recovered From Coronavirus Disease 2019 (COVID-19). JAMA Cardiol. 2020;5(11):1265-1273.
</ref><ref>Abbasi J. Researchers Investigate What COVID-19 Does to the Heart. ''JAMA.'' 2021;325(9):808–811.
</ref><ref>Kotecha T, Knight DS, Razvi Y, Kumar K, Vimalesvaran K, Thornton G, Patel R, Chacko L, Brown JT, Coyle C, Leith D, Shetye A, Ariff B, Bell R, Captur G, Coleman M, Goldring J, Gopalan D, Heightman M, Hillman T, Howard L, Jacobs M, Jeetley PS, Kanagaratnam P, Kon OM, Lamb LE, Manisty CH, Mathurdas P, Mayet J, Negus R, Patel N, Pierce I, Russell G, Wolff A, Xue H, Kellman P, Moon JC, Treibel TA, Cole GD, Fontana M. Patterns of myocardial injury in recovered troponin-positive COVID-19 patients assessed by cardiovascular magnetic resonance. Eur Heart J. 2021;42(19):1866-1878.
</ref><ref>M.Imazio. COVID-19 as a Possible Cause of Myocarditis and Pericarditis. American College of Cardiology, Expert Analysis. 2021;19-37.
</ref><ref>Task Force for the management of COVID-19 of the European Society of Cardiology. European Society of Cardiology guidance for the diagnosis and management of cardiovascular disease during the COVID-19 pandemic: part 1-epidemiology, pathophysiology, and diagnosis. Eur Heart J. 2022;43(11):1033-1058. </ref> Musculoskeletal short- and long-term consequences of COVID-19 are also discussed.<ref>Ramani SL, Samet J, Franz CK, Hsieh C, Nguyen CV, Horbinski C, Deshmukh S. Musculoskeletal involvement of COVID-19: review of imaging. Skeletal Radiol. 2021;50(9):1763-1773.
</ref> More research is required to understand the mechanisms by which Long COVID develops.<ref name=":23" />  
 
== Long COVID Management  ==


== Long Covid Management  ==
Currently, there is no evidence from randomised controlled trials on the effectiveness of rehabilitation for Long COVID. Most recommendations from international guidance on rehabilitation for Long COVID are based on expert opinion or evidence from other diseases. Suggestions include patient-centred management with continuous follow-up to decrease the severity of current symptoms. Attention should be placed on creating therapeutic alliances and setting reasonable goals and expectations through discussions with patients and caregivers.<ref name=":3">Chuang HJ, Lin CW, Hsiao MY, Wang TG, Liang HW. Long COVID and rehabilitation. J Formos Med Assoc. 2023;S0929-6646(23)00107-9. </ref>


The National Institute for Health and Care Excellence (NICE) published a rapid guideline on managing Long Covid <ref name=":4" />, 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 <ref>https://www.bmj.com/content/370/bmj.m2912</ref>.  <br>
A multi-disciplinary approach to the assessment and management of Long COVID is essential.<ref name=":23" /> The team approach could include a rehabilitation physician along with multiple speciality physicians, occupational therapists, physiotherapists, pharmacists, nursing professionals, mental health experts, community workers and other health care professionals.<ref>Swarnakar R, Yadav SL. Rehabilitation in long COVID-19: A mini-review. World Journal of Methodology. 2022;12(4):235.</ref> Encompassing a disability model could improve clinicians’ responses to Long COVID.<ref>Altiery De Jesús VV, Alwan N, Callard F, Berger Z. Listening to Long COVID: Epistemic Injustice and COVID-19 morbidity. OSFPrePrints, 2021. </ref>


== Outcome Measures ==
Rehabilitation professionals should screen for cognitive, physical, emotional and social triggers. The focus of rehabilitation is optimising function, mitigating disability and establishing strategies to support living with a disability. Healthcare professionals need to support people living with Long COVID in managing and anticipating their setbacks. Individuals living with Long COVID need to be heard and understood by their healthcare professionals. Thus, rehabilitation professionals should create a supportive environment, be non-judgmental and respectful that the Long COVID patient is the expert in their health. It is important not to blame the patient for setbacks or exacerbations and to celebrate small successes.<ref>DeMars J, Brown DA, Angelidis I, Jones F, McGuire F, O'Brien KK, Oller D, Pemberton S, Tarrant R, Verduzco-Gutierrez M, Gross DP. What is Safe Long COVID Rehabilitation? J Occup Rehabil. 2023;33(2):227-230. </ref>
The National Institute for Health Research (NIHR)  has encouraged the use of the [https://www.who.int/classifications/international-classification-of-functioning-disability-and-health 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 <ref name=":8" />. The ICF has been operationalised into the [https://apps.who.int/classifications/icfbrowser/ ICF Browser], [https://www.who.int/docs/default-source/classification/icf/icfchecklist.pdf?sfvrsn=b7ff99e9_4 ICF Checklist], and [https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health/who-disability-assessment-schedule World Health Organization Disability Assessment Schedule (WHODAS) 2.0].   


Some studies have performed a level of functional assessment, including "Post-COVID-19 Functional Status Assessment" (PCFS) <ref>https://erj.ersjournals.com/content/56/1/2001494</ref><ref>https://www.medrxiv.org/content/10.1101/2020.08.26.20182618v1</ref><ref name=":10">https://openres.ersjournals.com/content/early/2020/10/15/23120541.00655-2020</ref>, "COVID-19 Yorkshire Rehabilitation Scale" (C19-YRS)<ref>https://www.acnr.co.uk/wp-content/uploads/2020/06/C19-YRS-Covid-Rehab-screening-tool.pdf</ref><ref>https://onlinelibrary.wiley.com/doi/10.1002/jmv.26368</ref><ref>https://link.springer.com/article/10.1007/s40520-020-01685-y</ref>, "Core Outcome Measure for Recovery" <ref>https://journals.lww.com/ccmjournal/Fulltext/2020/11000/Core_Outcomes_Set_for_Trials_in_People_With.10.aspx</ref>, sit-to-stand tests <ref name=":10" /><ref name=":11">https://www.medrxiv.org/content/10.1101/2020.08.12.20173526v1</ref> , gait speed tests <ref name=":10" /><ref>https://www.medrxiv.org/content/10.1101/2020.10.15.20205054v1</ref><ref>https://www.resmedjournal.com/article/S0954-6111(20)30337-1/fulltext</ref><ref>https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-020-01429-6</ref><ref>https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-020-01546-2</ref>, modified Rankin Score <ref>https://www.medrxiv.org/content/10.1101/2020.10.16.20211029v1</ref>, and [https://physio-pedia.com/36-Item_Short_Form_Survey_(SF-36)?utm_source=physiopedia&utm_medium=search&utm_campaign=ongoing_internal SF-36 questionnaire] <ref name=":11" />
=== Evaluation and Treatment ===
Rehabilitation professionals should initiate evaluations by ruling out red flags such as exertional desaturation, cardiac impairment, PESE (post-exertional symptom exacerbation) and orthostatic intolerance. PESE refers to the worsening of symptoms immediately or 12-72 hours after exertion and can last for hours to weeks. These symptoms can include fatigue, pain, dyspnoea and cognitive impairment. Individuals with PESE should monitor their duration, intensity and onset of symptom exacerbations and identify potential triggers. An energy conservation technique is suggested to decrease exacerbations. Increasing rehabilitation intensity without considering PESE should be avoided. Individuals with orthostatic intolerance symptoms such as dizziness, breathlessness, presyncope or syncope after a prolonged period in an upright position should be identified.<ref name=":3" />


== Management / Interventions  ==
Mental health problems, psychological therapy, pharmacological therapy and sleep disorders are additional areas that can be addressed in treatment. Some techniques for these issues have included mindfulness-based stress reduction and exercise training. Cognitive impairments can be addressed with environmental modification, pacing and assistive tools, and vital cognitive exercise.<ref name=":3" />


There is currently insufficient evidence on safe and effective interventions for management of Long Covid symptoms and impairments or disability.  
=== Exercise Therapy ===
There is currently insufficient evidence on safe and effective interventions for the management of Long COVID symptoms and impairments or disability. But the World Health Organization has called on countries to offer people living with Long COVID more rehabilitation.<ref>Wise J. Long covid: WHO calls on countries to offer patients more rehabilitation. BMJ 2021;372:n405.
</ref>


The National Institute for Health and Care Excellence (NICE) has cautioned against the use of graded exercise therapy (GET) for managing post-viral fatigue <ref>https://www.bmj.com/content/370/bmj.m2912</ref>, in responce to draft guidance updates on the management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) <ref>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</ref><ref>https://www.nice.org.uk/guidance/indevelopment/gid-ng10091</ref>. Substantial concerns exist regarding the potential for harm in respect to GET as an intervention for ME/CFS <ref>https://www.dialogues-mecfs.co.uk/films/graded-exercise-therapy/</ref>. Post-exertion malaise is a symptom experienced by people living with ME/CFS <ref>https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x</ref>, and is characterised as the worsening of symptoms by exertion including physical, cognitive and emotional activities <ref>https://www.frontiersin.org/articles/10.3389/fneur.2020.01025/full</ref><ref>https://meassociation.org.uk/wp-content/uploads/MEA-Research-Review-Assessing-PEM-in-MECFS-25.03.19.pdf?fbclid=IwAR1iT9TOYyOfdofaTsflQRdxkg_VEjY-0wFMOCLJJ9l8ZGQ1dgL3EI-MCeA.</ref><ref>https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0197811</ref>, 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 <ref name=":5" /> warranting caution with exercise as a rehabilitation intervention for Long Covid and people living with COVID-19. 
Rehabilitation must always be safe and effective for the patient. With Long COVID, we should note that exercise is not always medicine. Sometimes rest is medicine.<ref name=":8">Brown D, Patman S, Alghwiri A, Skipper L, Hossain K, Setchell J. Long Covid. (Discussion) June 2023. World Physiotherapy Congress Dubai 2023.</ref>


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 <ref>https://www.mdpi.com/2075-4418/9/1/26</ref><ref>https://www.frontiersin.org/articles/10.3389/fped.2018.00330/full</ref>, plus screening for potential cardiac involvement <ref>https://www.sciencedirect.com/science/article/abs/pii/S1936878X20309098</ref> due to 32% prevalence of cardiac impairment among a young and low-risk population of people living with Long Covid and persistent symptoms <ref name=":9" />.
Physiotherapists often use graded exercise therapy (GET) to progress patients, but this may make post-exertion malaise worse.<ref name=":8" /> The National Institute for Health and Care Excellence (NICE) has, for instance, cautioned against the use of GET for managing post-viral fatigue<ref name=":13">Torjesen I. NICE advises against using graded exercise therapy for patients recovering from covid-19. BMJ. 2020;370.</ref> in response to draft guidance updates on the management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).<ref name=":17">National Institute for Health and Care Excellence (NICE), NICE outlines steps needed to put ME/CFS guideline into practice. 2020. Available from: https://www.nice.org.uk/news/article/nice-outlines-steps-needed-to-put-me-cfs-guideline-into-practice [Accessed 8 January 2020].</ref><ref>National Institute for Health and Care Excellence (NICE). Myalgic encephalomyelitis (or encephalopathy) /chronic fatigue syndrome: diagnosis and management, In development [GID-NG10091] Expected publication date: <time>21 April 2021. Available from:</time> https://www.nice.org.uk/guidance/NG206 <time>[Accessed 8th January 2021].</time>              
</ref>


The National Health Service (NHS) provides free online self-management rehabilitation for people recovering from COVID-19 called "[https://www.yourcovidrecovery.nhs.uk/ Your COVID Recovery]".    
* Substantial concerns exist regarding the potential for harm with respect to GET as an intervention for ME/CFS.<ref>Dialogues for a Neglected Illness (Dialogues for ME/CFS). Graded Exercise Therapy. Available From: https://www.dialogues-mecfs.co.uk/ (Accessed 8 January 2021).</ref>
* Post-exertion malaise is a symptom experienced by people living with ME/CFS,<ref>Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles AP, Speight N, Vallings R, Bateman L. Myalgic encephalomyelitis: international consensus criteria. Journal of internal medicine. 2011;270(4):327-38.</ref> and is characterised as the worsening of symptoms by exertion including physical, cognitive and emotional activities,<ref>Stussman B, Williams A, Snow J, Gavin A, Scott R, Nath A, Walitt B. Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Frontiers in Neurology. 2020;11:1025.</ref><ref>Stephens C. MEA Summary Review: Assessing


Mount Sinai Long Covid Recovery programme provides free online breath-work for Long Covid called "[https://stasisperformance.com/covid19?fbclid=IwAR3eOToRmhIlIacQcODGM81CwS4wEAJTkypY80uCe1NUFo9HfOmy1eJTd9g STASIS]".    
PEM (Post-exertional malaise). The ME Association. 2019. Available from: https://meassociation.org.uk/wp-content/uploads/MEA-Research-Review-Assessing-PEM-in-MECFS-25.03.19.pdf [Accessed 8 January 2021].</ref><ref>Chu L, Valencia IJ, Garvert DW, Montoya JG. Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey. PLoS One. 2018;13(6):e0197811. </ref> which would prohibit exercise interventions.
* '''Among a sample of 3,762 people living with Long COVID, post-exertion malaise was reported by 72.2%.'''<ref name=":17" /> Moreover, exercise is a common trigger for symptom relapses.<ref name=":5" /><ref name=":26">Ziauddeen N, Gurdasani D, O'Hara ME, Hastie C, Roderick P, Yao G, Alwan NA. Characteristics and impact of Long Covid: Findings from an online survey. PLoS One. 2022;17(3):e0264331.  </ref>


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 <ref>https://www.fundingawards.nihr.ac.uk/award/NIHR132046</ref>.  
We must, therefore, be careful when using 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,<ref name=":15">Holtzman CS, Bhatia S, Cotler J, Jason LA. Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey. Diagnostics. 2019;9(1):26.</ref><ref name=":16" /> plus screening for potential cardiac involvement.<ref>Phelan D, Kim JH, Elliott MD, Wasfy MM, Cremer P, Johri AM et al. Screening of Potential Cardiac Involvement in Competitive Athletes Recovering from COVID-19: An Expert Consensus Statement. JACC: Cardiovascular Imaging 2020;13(12):2635-2652.</ref> We can use the DePaul Symptom Questionnaire to screen for post-exertion malaise.<ref name=":16">Jason LA, Sunnquist M. The Development of the DePaul Symptom Questionnaire: Original, Expanded, Brief, and Pediatric Versions. Frontiers in paediatrics. 2018;6:330.</ref> If this symptom is present, exercise may not be considered a safe rehabilitation intervention.<ref name=":17" />


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 <ref>https://www.physiosforme.com/heart-rate-monitoring</ref><ref>https://www.physiosforme.com/post/new-podcast-heart-rate-monitoring</ref>. Useful resources on pacing are provided below:
Activity management or [https://longcovid.physio/pacing pacing] and [https://longcovid.physio/heart-rate-monitoring heart rate monitoring] are, however, likely to be a safe and effective intervention for managing fatigue and post-exertion malaise. Useful resources on specific rehabilitation ideas, pacing and heart rate monitoring are provided below:   
*World Physiotherapy response to COVID-19: [https://world.physio/sites/default/files/2021-06/Briefing-Paper-9-Long-Covid-FINAL-2021.pdf Safe Rehabilitation Approaches for People Living with Long Covid: Physical Activity and exercise]. June 2021
* Royal College of Occupational Therapy (RCOT): "[https://www.rcot.co.uk/recovering-covid-19-post-viral-fatigue-and-conserving-energy Post viral fatigue and energy conservation]"
* Royal College of Occupational Therapy (RCOT): "[https://www.rcot.co.uk/recovering-covid-19-post-viral-fatigue-and-conserving-energy Post viral fatigue and energy conservation]"
* Royal College of Occupational Therapy (RCOT): "[https://www.rcot.co.uk/how-manage-post-viral-fatigue-after-covid-19 How to manage post-viral fatigue after COVID-19 - Practical advice for people who have been treated in hospital]"
* Royal College of Occupational Therapy (RCOT): "[https://www.rcot.co.uk/how-manage-post-viral-fatigue-after-covid-19 How to manage post-viral fatigue after COVID-19 - Practical advice for people who have been treated in hospital]"
* Royal College of Occupational Therapy (RCOT): "[https://www.rcot.co.uk/how-manage-post-viral-fatigue-after-covid-19-0 How to manage post-viral fatigue after COVID-19 - Practical advice for people who have recovered at home]"
* Royal College of Occupational Therapy (RCOT): "[https://www.rcot.co.uk/how-manage-post-viral-fatigue-after-covid-19-0 How to manage post-viral fatigue after COVID-19 - Practical advice for people who have recovered at home]"
* Royal College of Occupational Therapy (RCOT): "[https://www.rcot.co.uk/conserving-energy How to conserve your energy]"  
* Royal College of Occupational Therapy (RCOT): "[https://www.rcot.co.uk/conserving-energy How to conserve your energy]"
* Workwell Foundation & Dialogues ME/CFS: "[https://www.dialogues-mecfs.co.uk/films/pacing/ Activity and Energy Management – Pacing]"  
* Workwell Foundation & Dialogues ME/CFS: "[https://www.dialogues-mecfs.co.uk/films/pacing/ Activity and Energy Management – Pacing]"
* PhysioForME: "[https://www.physiosforme.com/pacing Pacing]"  
* PhysioForME: "[https://www.physiosforme.com/pacing Pacing]"
* ME Action: "[https://www.meaction.net/wp-content/uploads/2020/10/Pacing-and-Management-Guide-for-ME_CFS-8.pdf Pacing and management guide for ME/CFS]"
* Sheffield Hallam University Advanced Wellbeing Research Centre (AWRC): "Fatigue" [https://www.youtube.com/watch?v=CIpXGB-8DWI Video 1], [https://www.youtube.com/watch?v=hIGYdjcZi7M Video 2], [https://www.youtube.com/watch?v=nIcOVUqQMfI Video 3], [https://www.youtube.com/watch?v=HNFfrVUpdK0 Video 4]  
* Action for ME: "[https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf Pacing for people with M.E. A detailed guide to managing energy, rest and  activity for adults with mild/moderate M.E.]"
* Action for ME: "[https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf Pacing for people with M.E. A detailed guide to managing energy, rest and  activity for adults with mild/moderate M.E.]"
* Emerge Australia: "[https://www.emerge.org.au/Handlers/Download.ashx?IDMF=2a2287ee-b84d-428f-b72e-00da812ddd7c Pacing]"  
* PhysioForME: "[https://www.physiosforme.com/heart-rate-monitoring Heart Rate Monitoring]"
* PhysioForME: "[https://www.physiosforme.com/post/new-podcast-heart-rate-monitoring Heart Rate Monitoring Podcast]"
* ME Association: "[https://meassociation.org.uk/wp-content/uploads/MEA-Research-Review-Assessing-PEM-in-MECFS-25.03.19.pdf Assessing Post Exertion Malaise (PEM)]" page 6
* National Health Service (NHS) provides free online self-management rehabilitation for people recovering from COVID-19 called "[https://www.yourcovidrecovery.nhs.uk/ Your COVID Recovery]"
* Mount Sinai Long COVID Recovery programme provides free online breath-work for Long COVID called "[https://stasisperformance.com/covid19?fbclid=IwAR3eOToRmhIlIacQcODGM81CwS4wEAJTkypY80uCe1NUFo9HfOmy1eJTd9g STASIS]


== Peer Support  ==
=== Outcome Measures ===
Some studies have performed a level of functional assessment, including:   
* Post-COVID-19 Functional Status Assessment (PCFS) <ref>Klok FA, Boon GJ, Barco S, Endres M, Geelhoed JM, Knauss S, Rezek SA, Spruit MA, Vehreschild J, Siegerink B. The Post-COVID-19 Functional Status scale: a tool to measure functional status over time after COVID-19. European Respiratory Journal 2020;56(1).</ref><ref>Mohamed Hussein AA, Saad M, Zayan HE, Abdelsayed M, Moustafa M, Ezzat AR, Helmy R, Abd-Elaal H, Aly K, Abdelrheem S, Sayed I. Post-COVID-19 functional status: Relation to age, smoking, hospitalization, and previous comorbidities. Ann Thorac Med. 2021;16(3):260-265. </ref><ref name=":10">D'Cruz RF, Waller MD, Perrin F, Periselneris J, Norton S, Smith LJ, Patrick T, Walder D, Heitmann A, Lee K, Madula R, McNulty W, Macedo P, Lyall R, Warwick G, Galloway JB, Birring SS, Patel A, Patel I, Jolley CJ. Chest radiography is a poor predictor of respiratory symptoms and functional impairment in survivors of severe COVID-19 pneumonia. ERJ Open Res. 2021;7(1):00655-2020.</ref><ref>Machado FVC, Meys R, Delbressine JM, Vaes AW, Goërtz YMJ, van Herck M, Houben-Wilke S, Boon GJAM, Barco S, Burtin C, van 't Hul A, Posthuma R, Franssen FME, Spies Y, Vijlbrief H, Pitta F, Rezek SA, Janssen DJA, Siegerink B, Klok FA, Spruit MA. Construct validity of the Post-COVID-19 Functional Status Scale in adult subjects with COVID-19. Health Qual Life Outcomes 2021;19(1):40.
</ref>
* [https://c19-yrs.com/ COVID-19 Yorkshire Rehabilitation Scale (C19-YRS)] <ref name=":23" /><ref>Sivan M, Halpin S, Gee J. [https://www.acnr.co.uk/2020/06/c19-yrs/ Assessing long-term rehabilitation needs in COVID-19 survivors using a telephone screening tool (C19-YRS tool)]. Advances in Clinical Neurosciences and Rehabilitation. 2020;19(4):14-7.</ref><ref name=":19">Halpin SJ, McIvor C, Whyatt G, Adams A, Harvey O, McLean L, Walshaw C, Kemp S, Corrado J, Singh R, Collins T, O'Connor RJ, Sivan M. Postdischarge symptoms and rehabilitation needs in survivors of COVID-19 infection: A cross-sectional evaluation. J Med Virol. 2021;93(2):1013-1022.</ref><ref>Sivan M. Remote assessment for identifying COVID-19 post-acute care needs. Ageing Clinical and Experimental Research. 2020;32(10):2167-8.</ref>
*Core Outcome Measure for Recovery, which is a measure to define the absence of symptoms, resumption of usual daily activities, and return to the previous state of health before the illness using a 5-point Likert scale <ref>Tong A, Elliott JH, Azevedo LC, Baumgart A, Bersten A, Cervantes L, Chew DP, Cho Y, Cooper T, Crowe S, Douglas IS. Core outcomes set for trials in people with coronavirus disease 2019. Critical care medicine 2020;48(11):1622.</ref><ref>Tong A, Baumgart A, Evangelidis N, Viecelli AK, Carter SA, Azevedo LC, Cooper T, Bersten A, Cervantes L, Chew DP, Crowe S, Douglas IS, Flemyng E, Elliott JH, Hannan E, Horby P, Howell M, Ju A, Lee J, Lorca E, Lynch D, Manera KE, Marshall JC, Gonzalez AM, McKenzie A, Mehta S, Mer M, Morris AC, Needham DM, Nseir S, Povoa P, Reid M, Sakr Y, Shen N, Smyth AR, Simpson AJ, Snelling T, Strippoli GFM, Teixeira-Pinto A, Torres A, Turner T, Webb S, Williamson PR, Woc-Colburn L, Zhang J, Craig JC; COVID-19-Core Outcomes Set Investigators. Core Outcome Measures for Trials in People With Coronavirus Disease 2019: Respiratory Failure, Multiorgan Failure, Shortness of Breath, and Recovery. Crit Care Med. 2021;49(3):503-516.
</ref>
* Sit-to-stand tests <ref name=":10" /><ref name=":11">Arnold DT, Hamilton FW, Milne A, Morley AJ, Viner J, Attwood M, Noel A, Gunning S, Hatrick J, Hamilton S, Elvers KT, Hyams C, Bibby A, Moran E, Adamali HI, Dodd JW, Maskell NA, Barratt SL. Patient outcomes after hospitalisation with COVID-19 and implications for follow-up: results from a prospective UK cohort. Thorax 2021;76(4):399-401. </ref><ref>Núñez-Cortés R, Rivera-Lillo G, Arias-Campoverde M, Soto-García D, García-Palomera R, Torres-Castro R. Use of sit-to-stand test to assess the physical capacity and exertional desaturation in patients post COVID-19. Chron Respir  Dis 2021;18:1479973121999205.
</ref>
* Gait speed tests<ref name=":14" /><ref name=":10" /><ref>Raman B, Cassar MP, Tunnicliffe EM, Filippini N, Griffanti L, Alfaro-Almagro F, Okell T, Sheerin F, Xie C, Mahmod M, Mózes FE, Lewandowski AJ, Ohuma EO, Holdsworth D, Lamlum H, Woodman MJ, Krasopoulos C, Mills R, McConnell FAK, Wang C, Arthofer C, Lange FJ, Andersson J, Jenkinson M, Antoniades C, Channon KM, Shanmuganathan M, Ferreira VM, Piechnik SK, Klenerman P, Brightling C, Talbot NP, Petousi N, Rahman NM, Ho LP, Saunders K, Geddes JR, Harrison PJ, Pattinson K, Rowland MJ, Angus BJ, Gleeson F, Pavlides M, Koychev I, Miller KL, Mackay C, Jezzard P, Smith SM, Neubauer S. Medium-term effects of SARS-CoV-2 infection on multiple vital organs, exercise capacity, cognition, quality of life and mental health, post-hospital discharge. EClinicalMedicine. 2021;31:100683. </ref><ref>Daher A, Balfanz P, Cornelissen C, Müller A, Bergs I, Marx N, Müller-Wieland D, Hartmann B, Dreher M, Müller T. Follow up of patients with severe coronavirus disease 2019 (COVID-19): Pulmonary and extrapulmonary disease sequelae. Respiratory Medicine 2020;174:106197.</ref><ref>Huang Y, Tan C, Wu J, Chen M, Wang Z, Luo L, Zhou X, Liu X, Huang X, Yuan S, Chen C, Gao F, Huang J, Shan H, Liu J. Impact of coronavirus disease 2019 on pulmonary function in early convalescence phase. Respir Res. 2020;21(1):163. </ref><ref>Sonnweber T, Boehm A, Satanic S, Pizzini A, Aichner M, Sonnweber B, Kurz K, Koppelstätter S, Haschka D, Petzer V, Hilbe R. Persisting alterations of iron homeostasis in COVID-19 are associated with non-resolving lung pathologies and poor patients’ performance: a prospective observational cohort study. Respiratory Research 2020;21(1):1-9.</ref>
* Modified Rankin Score <ref>Savarraj JP, Burkett AB, Hinds SN, Paz AS, Assing AR, Juneja S, Colpo GD, Torres LF, Gusdon AM, McCullough L, Choi HA. Three-month outcomes in hospitalized COVID-19 patients. MedRxiv. 2020.</ref>
* [https://physio-pedia.com/EQ-5D?utm_source=physiopedia&utm_medium=search&utm_campaign=ongoing_internal EuroQOL EQ-5D-5L] <ref name=":14" />   
* [https://physio-pedia.com/36-Item_Short_Form_Survey_(SF-36)?utm_source=physiopedia&utm_medium=search&utm_campaign=ongoing_internal SF-36 questionnaire] <ref name=":11" />   
* [https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health/who-disability-assessment-schedule WHODAS 2.0] <ref name=":21" />   
* [https://www.washingtongroup-disability.com/ Washington Group on disability statistics] <ref name=":21" /><ref name=":27" />.   


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:
== Peer Support ==
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. Mutual respect and confidentiality are, therefore, requested in these groups. Many of these groups have outputs to share valuable information with allies. Long COVID Physio published [https://longcovid.physio/ blogs] with JOSPT highlighting the value of peer support. Long COVID groups include:
* [https://longcovid.physio/ Long COVID Physio] - [https://twitter.com/LongCovidPhysio Twitter]
* [https://linktr.ee/wearebodypolitic Body Politic] - [https://twitter.com/itsbodypolitic Twitter]
* [https://linktr.ee/wearebodypolitic Body Politic] - [https://twitter.com/itsbodypolitic Twitter]
* [https://www.youtube.com/channel/UCuyZkfBLDCwN3m3R3yHChYg Long Covid Physio] - [https://twitter.com/longcovidphysio?lang=en Twitter]
* [https://www.longcovid.org/ Long COVID Support] - [https://twitter.com/long_covid Twitter]
* [https://www.longcovid.org/ Long Covid Support] - [https://twitter.com/long_covid Twitter]
* [https://www.longcovidsos.org/ Long COVID SOS] - [https://twitter.com/LongCovidSOS Twitter]
* [https://www.longcovidsos.org/ Long Covid SOS] - [https://twitter.com/LongCovidSOS Twitter]
* [https://www.longcovidkids.org/ Long COVID Kids]
* [https://www.longcovidkids.org/ Long Covid Kids] - [https://twitter.com/long_recovery Twitter]
* [https://twitter.com/LongCovidItalia Long COVID Italia]  
* [https://twitter.com/LongCovidItalia Long Covid Italia]  
* [https://www.apresj20.fr/ Apres J20] (France) - [https://twitter.com/apresj20 Twitter]
* [https://www.apresj20.fr/ Apres J20] (France) - [https://twitter.com/apresj20 Twitter]
* [https://twitter.com/LongCovidWales Long Covid Wales]  
* [https://twitter.com/LongCovidWales Long COVID Wales]  
* [https://www.longcovid.scot/ Long Covid Scotland] - [https://twitter.com/LongCovidScot Twitter]
* [https://www.longcovid.scot/ Long COVID Scotland] - [https://twitter.com/LongCovidScot Twitter]
* [https://twitter.com/LongNetherlands Long Covid Netherlands]  
* [https://twitter.com/longcovidspain Long COVID Spain]  
* [https://twitter.com/longcovidspain Long Covid Spain]  
* [https://twitter.com/CPersistente Covid Persistente Espana]  
* [https://twitter.com/CPersistente Covid Persistente Espana]  
* [https://twitter.com/Covid19Valencia Long Covid Valencia]
* [https://twitter.com/AndaluciaCovid Covid Persistent Andalusia]
* [https://twitter.com/LongCovidCH Long Covid Switzerland]  
* [https://twitter.com/longcovidaragon Long COVID Aragon]
* [https://langzeitcovid.de/ Langzeit COVID Germany] - [https://twitter.com/LangzeitC Twitter]
* [https://twitter.com/Covid19Valencia Long COVID Valencia]
* [https://twitter.com/LongCovidCH Long COVID Switzerland]  
* [https://twitter.com/C19LH_Advocacy COVID-19 Longhauler Advocacy Project] (USA)  
* [https://twitter.com/C19LH_Advocacy COVID-19 Longhauler Advocacy Project] (USA)  
* [https://twitter.com/LongCovid_MN Long Covid Minnesota]   
* [https://twitter.com/LongCovid_MN Long COVID Minnesota]   
* [https://twitter.com/utc19longhaul?lang=en-gb Utah COVID-19 Long Haulers]   
* [https://twitter.com/utc19longhaul?lang=en-gb Utah COVID-19 Long Haulers]   
* [https://cancovid.ca/ CanCovid] (Canada) - [https://twitter.com/CanCovid Twitter]  
* [https://cancovid.ca/ CanCOVID] (Canada) - [https://twitter.com/CanCovid Twitter]  
* [https://twitter.com/LongCovidID Long Covid Indonesia]   
* [https://twitter.com/LongCovidCanada Long COVID Canada] 
* [https://twitter.com/CovidComunidad Covid Persistente Mexico Comunidad Solidaria]   
* [https://twitter.com/LongCovidID Long COVID Indonesia]   
* [https://twitter.com/CovidComunidad COVID Persistente Mexico Comunidad Solidaria]   
* [https://twitter.com/COVIDPERSISTEN2 COVID Persistente Mexico] 
* [https://twitter.com/covidpersistecl COVID Persistente Chile] 
* [https://twitter.com/CovidPersist_UY COVID-19 Persistent Uruguay] 
* [https://twitter.com/LongCovid_ARG COVID-19 Persistente Argentina] 
* [https://twitter.com/LongCovidNZ Long COVID New Zealand]   
* [https://covid19-recovery.org/ COVID-19 Patient Stories / Recovery Collective] - [https://twitter.com/RecoveryCovid19 Twitter]  
* [https://covid19-recovery.org/ COVID-19 Patient Stories / Recovery Collective] - [https://twitter.com/RecoveryCovid19 Twitter]  
* [https://patientresearchcovid19.com/ Patient led research for Long Covid] - [https://twitter.com/patientled Twitter]<br>  
* [https://patientresearchcovid19.com/ Patient-led research for Long COVID] - [https://twitter.com/patientled Twitter]  
* [https://twitter.com/LongCovidOT Long COVID OT] (Occupational Therapy) - [https://www.facebook.com/groups/685453145469418 Facebook]
* [https://twitter.com/longcovacademia Long COVID in Academia]
 
== Video Resources for Patients ==
 
<div class="row">
  <div class="col-md-4"> {{#ev:youtube|NcwwYG2pgAI|250}} <div class="text-right"><ref>Mayo Clinic. Mayo Clinic Minute: Dealing with 'brain fog' from long COVID-19. Available from: https://www.youtube.com/watch?v=NcwwYG2pgAI [last accessed 16/06/2023]</ref></div></div>
  <div class="col-md-4"> {{#ev:youtube|4pWZg_epDkg|250}} <div class="text-right"><ref>Long COVID Physio. Safe Long COVID Rehabilitation. Available from: https://www.youtube.com/watch?v=4pWZg_epDkg [last accessed 16/06/2023]]</ref></div></div>
<div class="col-md-4"> {{#ev:youtube|QdkU2zSqiuk|250}} <div class="text-right"><ref>Long COVID Physio. Impact of Long COVID on Day-to-Day Life. Available from: https://www.youtube.com/watch?v=QdkU2zSqiuk [last accessed 16/06/2023]</ref></div></div>
</div>


== References  ==
== References  ==
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Latest revision as of 17:10, 7 August 2023

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:

  • 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.[2]

** The name Long COVID acknowledges that the 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 people's experiences, draws attention to morbidity, and centres people with disability.[3]

"People call Long COVID by many names, including post-COVID conditions, long-haul COVID, post-acute COVID-19, long-term effects of COVID, and chronic COVID."[4]

What is Long COVID?[edit | edit source]

Long Covid has been preliminarily defined 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).[5]

Long COVID affects people who have been hospitalised with acute COVID-19 and those who managed in a community setting. There is growing evidence to suggest that individuals who have had both mild or severe COVID-19 can experience prolonged symptoms or develop Long COVID.[6][7][8][9][10][11][12][13][14] Long COVID is both common and debilitating.[15]

As of October 2021, the World Health Organization (WHO) has developed a case definition of post COVID-19 condition.

"Post-COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others* and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time."[16]

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. [15][5][17][18][19][20][21] including, but not limited to pulmonary, cardiovascular, gastrointestinal, reproductive, genitourinary, endocrine, renal, dermatologic, musculoskeletal, neurological, neuropsychiatric, immunological, ophthalmic, and audiological.[17]

The most common Long Covid symptom is fatigue.[17][18][22][23][14][24][25][26][10][27][28][29][30][31][32][12][33][34] The most frequently reported Long COVID symptoms after 6 months include fatigue, post-exertion malaise, and cognitive dysfunction.[17] Mental health symptoms associated with long COVID include anxiety (28% increase), increased presence of depression (13% increase), PTSD (20% increase), suicide ideation (10% increase) and decreased life satisfaction and daily functioning. Researchers and patients have distinguished more than 200 symptoms associated with long COVID.[35] The most common symptoms include:

  • tiredness
  • brain fog
  • cough
  • loss of smell or change in taste
  • fever
  • body aches
  • trouble sleeping
  • mood changes[36]

The multidimensional, episodic and often unpredictable nature of Long COVID has been described as "relapsing and remitting",[19] 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][37] Furthermore, outcomes are worse in working-age females than males, with females under 50 being over five times more likely to report incomplete recovery, over five times more likely to report a new disability, more likely to have severe fatigue, and more than six times more likely to report increased breathlessness than males under 50.[37] It is estimated that 30% of people not hospitalised with "mild" acute symptoms, continue to have symptoms 9 months after infection.[12] Preliminary evidence suggests children also experience Long COVID symptoms similar to adults.[38]

[39]

Long COVID Prevalence[edit | edit source]

The COVID-19 Infection Survey[40] is a nationally representative sample of the UK community population, from which it 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.[41][42]

Researchers have determined that Long COVID is more severe and common in individuals infected before the Omicron variant in 2021 and those who were unvaccinated. Additionally, reinfections were related to higher Long COVID severity and frequency compared to people who were only infected once.[35]

Pathological Process[edit | edit source]

The aetiology and pathophysiological causes of Long COVID symptoms remain unknown. Initial hypothesis includes: viral persistence,[43][44][45][46] continued hyperactive immune response,[47][48][49] cellular metabolic dysfunction,[50] auto-antibodies,[51][52] neurological dysfunction,[53][54][55][56] neuroimmunology,[57] neurological inflammation,[58] and organ impairment,[14] including cardiac impairment.[14][59][60][61][62][63] Musculoskeletal short- and long-term consequences of COVID-19 are also discussed.[64] More research is required to understand the mechanisms by which Long COVID develops.[15]

Long COVID Management[edit | edit source]

Currently, there is no evidence from randomised controlled trials on the effectiveness of rehabilitation for Long COVID. Most recommendations from international guidance on rehabilitation for Long COVID are based on expert opinion or evidence from other diseases. Suggestions include patient-centred management with continuous follow-up to decrease the severity of current symptoms. Attention should be placed on creating therapeutic alliances and setting reasonable goals and expectations through discussions with patients and caregivers.[65]

A multi-disciplinary approach to the assessment and management of Long COVID is essential.[15] The team approach could include a rehabilitation physician along with multiple speciality physicians, occupational therapists, physiotherapists, pharmacists, nursing professionals, mental health experts, community workers and other health care professionals.[66] Encompassing a disability model could improve clinicians’ responses to Long COVID.[67]

Rehabilitation professionals should screen for cognitive, physical, emotional and social triggers. The focus of rehabilitation is optimising function, mitigating disability and establishing strategies to support living with a disability. Healthcare professionals need to support people living with Long COVID in managing and anticipating their setbacks. Individuals living with Long COVID need to be heard and understood by their healthcare professionals. Thus, rehabilitation professionals should create a supportive environment, be non-judgmental and respectful that the Long COVID patient is the expert in their health. It is important not to blame the patient for setbacks or exacerbations and to celebrate small successes.[68]

Evaluation and Treatment[edit | edit source]

Rehabilitation professionals should initiate evaluations by ruling out red flags such as exertional desaturation, cardiac impairment, PESE (post-exertional symptom exacerbation) and orthostatic intolerance. PESE refers to the worsening of symptoms immediately or 12-72 hours after exertion and can last for hours to weeks. These symptoms can include fatigue, pain, dyspnoea and cognitive impairment. Individuals with PESE should monitor their duration, intensity and onset of symptom exacerbations and identify potential triggers. An energy conservation technique is suggested to decrease exacerbations. Increasing rehabilitation intensity without considering PESE should be avoided. Individuals with orthostatic intolerance symptoms such as dizziness, breathlessness, presyncope or syncope after a prolonged period in an upright position should be identified.[65]

Mental health problems, psychological therapy, pharmacological therapy and sleep disorders are additional areas that can be addressed in treatment. Some techniques for these issues have included mindfulness-based stress reduction and exercise training. Cognitive impairments can be addressed with environmental modification, pacing and assistive tools, and vital cognitive exercise.[65]

Exercise Therapy[edit | edit source]

There is currently insufficient evidence on safe and effective interventions for the management of Long COVID symptoms and impairments or disability. But the World Health Organization has called on countries to offer people living with Long COVID more rehabilitation.[69]

Rehabilitation must always be safe and effective for the patient. With Long COVID, we should note that exercise is not always medicine. Sometimes rest is medicine.[70]

Physiotherapists often use graded exercise therapy (GET) to progress patients, but this may make post-exertion malaise worse.[70] The National Institute for Health and Care Excellence (NICE) has, for instance, cautioned against the use of GET for managing post-viral fatigue[71] in response to draft guidance updates on the management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).[72][73]

  • Substantial concerns exist regarding the potential for harm with respect to GET as an intervention for ME/CFS.[74]
  • Post-exertion malaise is a symptom experienced by people living with ME/CFS,[75] and is characterised as the worsening of symptoms by exertion including physical, cognitive and emotional activities,[76][77][78] which would prohibit exercise interventions.
  • Among a sample of 3,762 people living with Long COVID, post-exertion malaise was reported by 72.2%.[72] Moreover, exercise is a common trigger for symptom relapses.[17][79]

We must, therefore, be careful when using 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,[80][81] plus screening for potential cardiac involvement.[82] We can use the DePaul Symptom Questionnaire to screen for post-exertion malaise.[81] If this symptom is present, exercise may not be considered a safe rehabilitation intervention.[72]

Activity management or pacing and heart rate monitoring are, however, likely to be a safe and effective intervention for managing fatigue and post-exertion malaise. Useful resources on specific rehabilitation ideas, pacing and heart rate monitoring are provided below:

Outcome Measures[edit | edit source]

Some studies have performed a level of functional assessment, including:

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. Mutual respect and confidentiality are, therefore, requested in these groups. Many of these groups have outputs to share valuable information with allies. Long COVID Physio published blogs with JOSPT highlighting the value of peer support. Long COVID groups include:

Video Resources for Patients[edit | edit source]

References[edit | edit source]

  1. World Health Organization. Naming the coronavirus disease (COVID-19) and the virus that causes it. Availabe from: https://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. National Institute for Health and Care Excellence (NICE), COVID-19 guideline scope: management of the long-term effects of COVID-19. 2020. Available from: https://www.nice.org.uk/guidance/ng188/documents/final-scope [Accessed 7 January 2021].
  3. Perego E, Callard F, Stras L, Melville-Johannesson B, Pope R, Alwan N. Why we need to keep using the patient made term “Long Covid. BMJ Opinion. 2020.
  4. Long COVID or Post-COVID Conditions. Updated Dec. 16, 2022. Centres for Disease Control and Prevention. Available From: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
  5. 5.0 5.1 National Institute for Health and Care Excellence (NICE). COVID-19 Rapid Guideline: Managing The Long-term Effects of COVID-19. 2020. Available From: https://www.nice.org.uk/guidance/ng188 [Accessed 8 January 2021].
  6. Public Health England. COVID-19: epidemiology, virology and clinical features. 2021.
  7. Townsend L, Dowds J, O'Brien K, Sheill G, Dyer AH, O'Kelly B, Hynes JP, Mooney A, Dunne J, Ni Cheallaigh C, O'Farrelly C, Bourke NM, Conlon N, Martin-Loeches I, Bergin C, Nadarajan P, Bannan C. Persistent Poor Health after COVID-19 Is Not Associated with Respiratory Complications or Initial Disease Severity. Ann Am Thorac Soc. 2021;18(6):997-1003.
  8. Graham EL, Clark JR, Orban ZS, Lim PH, Szymanski AL, Taylor C, DiBiase RM, Jia DT, Balabanov R, Ho SU, Batra A, Liotta EM, Koralnik IJ. Persistent neurologic symptoms and cognitive dysfunction in non-hospitalized Covid-19 "long haulers". Ann Clin Transl Neurol. 2021;8(5):1073-1085.
  9. Brodin P. Immune determinants of COVID-19 disease presentation and severity. Nature Medicine, 2021;27:28–33.
  10. 10.0 10.1 Townsend L, Dyer AH, Jones K, Dunne J, Mooney A, Gaffney F, O'Connor L, Leavy D, O'Brien K, Dowds J, Sugrue JA. Persistent fatigue following SARS-CoV-2 infection is common and independent of the severity of initial infection. Plos One. 2020;9:15(11).
  11. Augustin M, Schommers P, Stecher M, Dewald F, Gieselmann L, Gruell H, Horn C, Vanshylla K, Cristanziano VD, Osebold L, Roventa M. Recovered not restored: Long-term health consequences after mild COVID-19 in non-hospitalized patients. MedRxiv. 2021;2021-03.
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