Long COVID

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Long COVID logo with Coronavirus icon

Long COVID, long tail covid, Post-Acute Sequelae of COVID-19 (PASC), post-acute COVID-19 and ongoing COVID are terms used to describe a group of long term health problems that are found in a significant minority of people who developed COVID-19 and remain ill a number of weeks or months later.[1][2][3][4]

The name Long COVID was coined by patient Elisa Perego in May 2020,[5] and in February 2021 the CDC introduced the alternative name Post-Acute Sequelae of COVID-19 (PASC).[6]

In February 2020, the World Health Organization stated that the expected recovery time from COVID-19 was 2 weeks for mild cases, and between three and six weeks for severe cases;[7] follow-up studies then identified a significant number of COVID-19 patients had remained ill much longer than this: those with long COVID.[1][2]

A similar phenomenon to long COVID occurred after the 2003 outbreak of the similar SARS coronavirus, which lead to a post-SARS syndrome being proposed that included chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep. Another study found a subgroup SARS survivors developed chronic fatigue syndrome immediately after SARS.[8][9]

Long-haulers[edit | edit source]

A "long-hauler" is someone with long COVID, meaning someone who became ill with confirmed or suspected COVID-19, who has remained ill with long-term symptoms many weeks or months later after first becoming ill.[3][5]

What is long COVID[edit | edit source]

Long COVID poster - 1 in 10 people with COVID-19 may develop long COVID

Long COVID appears to be a multisystem disease, and may occur after any severity of COVID-19, including after relatively mild cases.[2][5]

Four different syndromes[edit | edit source]

A recent review suggested that long COVID may actually be four different syndromes:

Patients with long COVID may have several syndromes at once.[10]

Signs and symptoms[edit | edit source]

Patient surveys have reported that the following symptoms commonly occur in long COVID.

Other reported symptoms include:

“A very common feature is the relapsing, remitting nature of the illness, where you feel as though you’ve recovered, then it hits you back

Dr. Nisreen Alwan, BMJ, Sep 2020

COVID-19 testing[edit | edit source]

While some people with long COVID did have a positive test result for COVID-19, others were denied tests due to the limited availability of tests at the time, or they tested negative but were found to have clear evidence of COVID-19 from blood count tests or chest X-rays.[10][15] Some people with Long COVID have described never having a cough or fever at the start of their illness, but developed these symptoms later. Long COVID diagnosis does not depend on a previous positive test.[10][15]

Evidence of symptoms[edit | edit source]

There is no blood test or diagnostic biomarker to identify patients with long COVID. A study in the UK found that just over 10% of long COVID patients had abnormal findings on the standard tests and did not find an association between standard test results and degree of organ damage or long COVID severity.[16] The same study used MRI scans combined with patient questionnaires to assess organ damage, finding that multi-organ impairment was common in people with long COVID, despite the fact that 80% had not been hospitalized for COVID-19, the average patient age was forty-four years old, and rates of pre-existing conditions were also low.[16]

Research[edit | edit source]

Surveys of data collected and published by long haulers using social media were the first evidence of what symptoms and health problems were caused by long COVID.[17] Later academic studies confirmed many of the initial long hauler survey findings, although many only involved patients discharged from hospital,[18] patients who had been able to access early testing and tested positive, or patients who had sought medical care in a particular location.[19] People with mild COVID-19 symptoms, leaving people denied testing and those who may have had false negative test results and people who tested positive but were asymptomatic underrepresented in long COVID research.[17]

Treatment[edit | edit source]

Pacing[edit | edit source]

Pacing is a method of activity management which aims to adapt everday activities in order to avoid relapses or increased symptoms.

Exercise therapy[edit | edit source]

ME/CFS patient groups have raised concerns about the use of graded exercise therapy (GET) in long COVID patients and a similar warning has been issued by NICE in the UK.[20] Graded exercise therapy, which is sometimes incorrectly referred to as "activity management" involves patients initially reducing their activity levels to a level that prevents regular crashes, and then typically increasing activity by 10% each week regardless of any increased symptoms or worsening illness. In graded exercise patients are told to ignore deterioration or increased symptoms and "push through" them.

Theory and evidence[edit | edit source]

In graded exercise therapy patients are told that their symptoms are caused only by inactivity and other "bad habits" rather than an underlying illness. These assumptions have very weak evidence, and significant evidence exists of underlying illness in ME/CFS; there is a lack of research about exercise therapy for long COVID illness[1] but some symptoms are inconsistent with this "deconditioning" assumption and some research has found physical abnormalities in some patients weeks or month after infection. Surveys of ME/CFS patients have consistently shown that large numbers of patients deteriorate as a result of graded exercise therapy, and a significant number become severely ill and never return to the level of functioning they had before the treatment.

ME/CFS[edit | edit source]

Postviral fatigue syndrome is one of the previous names used for Myalgic Encephalomyelitis (ME), sometimes known as Chronic Fatigue Syndrome (CFS), and it commonly begins immediately after events such as a virus, bacterial or other infection.[21] ME/CFS is not normally diagnosed until symptoms have persisted for six months or more, and tests must be run to exclude other possible causes of the symptoms.[22] Some contagious diseases including Epstein-Barr virus, certain enteroviruses,[21] and the SARS coronavirus,[8] have caused outbreaks of ME/CFS. It is not yet known how likely it is for ME/CFS to begin immediately after COVID-19 illness, although around 10% people with certain viruses are known to develop ME/CFS, and according to the BMJ around 10% of people with COVID-19 have developed long COVID. A significant number of those with long COVID have been found to develop ME/CFS, but it is not known how common this is.[2][10]

Patient surveys[edit | edit source]

Not peer reviewed

Data collected: Apr 21 - May 2 2020. Respondents: 640
Data collected: Jul 25, 2020. Respondents: 1,567+

Notable studies[edit | edit source]

  • Jul 24, 2020, Outcomes of Cardiovascular Magnetic Resonance Imaging in Patients Recently Recovered From Coronavirus Disease 2019 (COVID-19)[18](Full text)
  • Aug 11, 2020, Management of post-acute covid-19 in primary care[2] - (Full text)
  • Aug 14, 2020 (pre-print), Patient outcomes after hospitalisation with COVID-19 and implications for follow-up; results from a prospective UK cohort[19] - (Full text) - from the DISCOVER project
  • Aug 20, 2020, New-Onset Diabetes in Covid-19[11] - (Full text)
  • Oct 1, 2020, Long-term consequences of COVID-19: research needs[14] - (Full text)
  • Oct 14, 2020, Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID[15] - (Full text)
  • Oct 16, 2020, Multi-organ impairment in low-risk individuals with long COVID[16] -(Full text)
  • Oct 21, 2020, Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App[23] - (Full text)

Presentations, interviews and videos[edit | edit source]

Letters and blogs[edit | edit source]

National and international health bodies[edit | edit source]

News articles[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. 1.01.11.21.3 Nabavi, Nikki (September 7, 2020). "Long covid: How to define it and how to manage it". The BMJ. 370: bmj.m3489.
  2. 2.02.12.22.32.4 Greenhalgh, Trisha; Knight, Matthew; A'Court, Christine; Buxton, Maria; Husain, Laiba (August 11, 2020). "Management of post-acute covid-19 in primary care". The BMJ. 370: m3026. doi:10.1136/bmj.m3026.
  3. 3.03.1 Yong, Ed (August 19, 2020). "Long-Haulers Are Redefining COVID-19". The Atlantic. ISSN 1072-7825. Retrieved August 21, 2020.
  4. National Institute for Health Research. "Living with COVID: NIHR publishes dynamic themed review into 'ongoing COVID'". www.nihr.ac.uk. Retrieved October 15, 2020.
  5. 5.05.15.2 Perego, Elisa; Callard, Felicity; Stras, Laurie; Melville-Jóhannesson, Barbara; Pope, Rachel; Alwan, Nisreen A (October 1, 2020). "Why we need to keep using the patient made term "Long Covid"". The BMJ. Retrieved October 11, 2020.
  6. Collins, Francis (January 19, 2021). "Trying to Make Sense of Long COVID Syndrome". Retrieved March 1, 2021.
  7. World Health Organization (February 24, 2020). "WHO Director-General's opening remarks at the media briefing on COVID-19". World Health Organization. Retrieved September 24, 2020.
  8. 8.08.1 Moldofsky, Harvey; Patcai, John (March 24, 2011). "Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study". BMC Neurology. 11 (1): 37. doi:10.1186/1471-2377-11-37. ISSN 1471-2377. PMC 3071317. PMID 21435231.
  9. Lam, Marco Ho-Bun; Wing, Yun-Kwok; Yu, Mandy Wai-Man; Leung, Chi-Ming; Ma, Ronald C. W.; Kong, Alice P. S.; So, W. Y.; Fong, Samson Yat-Yuk; Lam, Siu-Ping (December 14, 2009). "Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up". Archives of Internal Medicine. 169 (22): 2142–2147. doi:10.1001/archinternmed.2009.384. ISSN 0003-9926.
  10. 10.010.110.210.3 NIHR (October 2020). "Living with covid-19. A dynamic review of the evidence around ongoing covid-19 symptoms (often called long covid)". evidence.nihr.ac.uk. Retrieved October 15, 2020.
  11. 11.011.1 Rubino, Francesco; Amiel, Stephanie A.; Zimmet, Paul; Alberti, George; Bornstein, Stefan; Eckel, Robert H.; Mingrone, Geltrude; Boehm, Bernhard; Cooper, Mark E. (August 20, 2020). "New-Onset Diabetes in Covid-19". New England Journal of Medicine. 383 (8): 789–790. doi:10.1056/NEJMc2018688. ISSN 0028-4793. PMC 7304415. PMID 32530585.
  12. 12.012.1 Lambert, Natalie J; Survivor Corps (July 2020). "COVID-19 "Long Hauler" Symptoms Survey Report" (PDF). Indiana University School of Medicine.
  13. National Health Service (September 7, 2020). "COVID-19 Long Term Health Effects".
  14. 14.014.1 Yelin, Dana; Wirtheim, Eytan; Vetter, Pauline; Kalil, Andre C.; Bruchfeld, Judith; Runold, Michael; Guaraldi, Giovanni; Mussini, Cristina; Gudiol, Carlota (October 1, 2020). "Long-term consequences of COVID-19: research needs". The Lancet Infectious Diseases. 20 (10): 1115–1117. doi:10.1016/S1473-3099(20)30701-5. ISSN 1473-3099. PMID 32888409.
  15. 15.015.115.2 Kingstone, Tom; Taylor, Anna K.; O'Donnell, Catherine A.; Atherton, Helen; Blane, David N.; Chew-Graham, Carolyn A. (October 14, 2020). "Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID". BJGP Open. doi:10.3399/bjgpopen20X101143. ISSN 2398-3795. PMID 33051223.
  16. 16.016.116.2 Dennis, Andrea; Wamil, Malgorzata; Kapur, Sandeep; Alberts, Johann; Badley, Andrew D.; Decker, Gustav Anton; Rizza, Stacey A.; Banerjee, Rajarshi; Banerjee, Amitava (October 16, 2020). "Multi-organ impairment in low-risk individuals with long COVID". medRxiv: 2020.10.14.20212555. doi:10.1101/2020.10.14.20212555.
  17. 17.017.117.2 Assaf G, Davis H, McCorkell L, Wei H, O'Neil B, Akrami A, Low R, Mercier J, A A, L T, C A, S M, N L, H N, D JD, S (May 11, 2020). "What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team".
  18. 18.018.1 Puntmann, Valentina O.; Carerj, M. Ludovica; Wieters, Imke; Fahim, Masia; Arendt, Christophe; Hoffmann, Jedrzej; Shchendrygina, Anastasia; Escher, Felicitas; Vasa-Nicotera, Mariuca (July 27, 2020). "Outcomes of Cardiovascular Magnetic Resonance Imaging in Patients Recently Recovered From Coronavirus Disease 2019 (COVID-19)". JAMA Cardiology. doi:10.1001/jamacardio.2020.3557. ISSN 2380-6583.
  19. 19.019.1 Arnold, David T.; Hamilton, Fergus W.; Milne, Alice; Morley, Anna; Viner, Jason; Attwood, Marie; Noel, Alan; Gunning, Samuel; Hatrick, Jessica (August 14, 2020). "Patient outcomes after hospitalisation with COVID-19 and implications for follow-up; results from a prospective UK cohort". medRxiv: 2020.08.12.20173526. doi:10.1101/2020.08.12.20173526.
  20. 20.020.1 Forward-ME (August 27, 2020). "Letter re Covid-19 Management and Exercise Caution" (PDF).
  21. 21.021.1 Carruthers, BM; van de Sande, MI; De Meirleir, KL; Klimas, NG; Broderick, G; Mitchell, T; Staines, D; Powles, ACP; Speight, N; Vallings, R; Bateman, L; Bell, DS; Carlo-Stella, N; Chia, J; Darragh, A; Gerken, A; Jo, D; Lewis, DP; Light, AR; Light, KC; Marshall-Gradisnik, S; McLaren-Howard, J; Mena, I; Miwa, K; Murovska, M; Stevens, SR (2012), Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners (PDF), ISBN 978-0-9739335-3-6
  22. Institute of Medicine (2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Washington, DC: The National Academies Press
  23. Sudre, Carole H.; Murray, Benjamin; Varsavsky, Thomas; Graham, Mark S.; Penfold, Rose S.; Bowyer, Ruth C.; Pujol, Joan Capdevila; Klaser, Kerstin; Antonelli, Michela (October 19, 2020). "Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App". medRxiv: 2020.10.19.20214494. doi:10.1101/2020.10.19.20214494.
  24. Torjesen, Ingrid (July 21, 2020). "NICE cautions against using graded exercise therapy for patients recovering from covid-19". The BMJ. 370. doi:10.1136/bmj.m2912. ISSN 1756-1833. PMID 32694164.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

pacing The practice of staying within one's "energy envelope" or personal limit by combining periods of activity with periods of rest or avoiding exerting beyond a certain level. ME/CFS patients use pacing to avoid or reduce post-exertional malaise (PEM). Some patients use a heart rate monitor to help with pacing.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.