Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Sep 21;23(9):e30274.
doi: 10.2196/30274.

Severe Fatigue in Long COVID: Web-Based Quantitative Follow-up Study in Members of Online Long COVID Support Groups

Maarten Van Herck #  1   2   3   4 , Yvonne M J Goërtz #  2   3   4 , Sarah Houben-Wilke  2 , Felipe V C Machado  2   3   4 , Roy Meys  2   3   4 , Jeannet M Delbressine  2 , Anouk W Vaes  2 , Chris Burtin  1 , Rein Posthuma  2   3   4 , Frits M E Franssen  2   3   4 , Bita Hajian  2 , Herman Vijlbrief  5 , Yvonne Spies  5 , Alex J van 't Hul  6 , Daisy J A Janssen  2   7 , Martijn A Spruit  2   3   4
Affiliations

Severe Fatigue in Long COVID: Web-Based Quantitative Follow-up Study in Members of Online Long COVID Support Groups

Maarten Van Herck et al. J Med Internet Res. .

Abstract

Background: Fatigue is the most commonly reported symptom in patients with persistent complaints following COVID-19 (ie, long COVID). Longitudinal studies examining the intensity of fatigue and differentiating between physical and mental fatigue are lacking.

Objective: The objectives of this study were to (1) assess the severity of fatigue over time in members of online long COVID peer support groups, and (2) assess whether members of these groups experienced mental fatigue, physical fatigue, or both.

Methods: A 2-wave web-based follow-up study was conducted in members of online long COVID peer support groups with a confirmed diagnosis approximately 3 and 6 months after the onset of infectious symptoms. Demographics, COVID-19 diagnosis, received health care (from medical professionals or allied health care professionals), fatigue (Checklist Individual Strength-subscale subjective fatigue [CIS-Fatigue]; 8-56 points), and physical and mental fatigue (self-constructed questions; 3-21 points) were assessed. Higher scores indicated more severe fatigue. A CIS-Fatigue score ≥36 points was used to qualify patients as having severe fatigue.

Results: A total of 239 patients with polymerase chain reaction/computed tomography-confirmed COVID-19 completed the survey 10 weeks (SD 2) and 23 weeks (SD 2) after onset of infectious symptoms, respectively (T1 and T2). Of these 239 patients, 198 (82.8%) were women; 142 (59.4%) had no self-reported pre-existing comorbidities; 208 (87%) self-reported being in good health before contracting COVID-19; and 62 (25.9%) were hospitalized during acute infection. The median age was 50 years (IQR 39-56). The vast majority of patients had severe fatigue at T1 and T2 (n=204, 85.4%, and n=188, 78.7%, respectively). No significant differences were found in the prevalence of normal, mild, and severe fatigue between T1 and T2 (P=.12). The median CIS-Fatigue score was 48 points (IQR 42-53) at T1, and it decreased from T1 to T2 (median change: -2 points, IQR -7 to 3; P<.001). At T1, a median physical fatigue score of 19 points (IQR 16-20) and a median mental fatigue score of 15 points (IQR 10-17) were reported; these scores were lower at T2 for physical but not for mental fatigue (median change for physical fatigue -1 point, IQR -3 to 0, P<.001; median change for mental fatigue 0 points, IQR -3 to 3, P=.52). At the time of completing the follow-up survey, 194/239 (81.2%) and 164/239 (68.6%) of all patients had received care from at least one medical professional and one allied health care professional, respectively.

Conclusions: Fatigue in members of online long COVID support groups with a confirmed COVID-19 diagnosis decreases from 10 to 23 weeks after onset of symptoms. Despite this, severe fatigue remains highly prevalent. Both physical and mental fatigue are present. It remains unclear whether and to what extent fatigue will resolve spontaneously in the longer term.

Trial registration: Netherlands Trial Register NTR8705; https://www.trialregister.nl/trial/8705.

Keywords: COVID-19; SARS-CoV-2; fatigue; long COVID; mental health; online health; online support; pandemic; post-COVID-19 syndrome; post-acute sequelae of COVID-19; post-viral fatigue.

PubMed Disclaimer

Conflict of interest statement

Conflicts of Interest: MAS reports grants from Netherlands Lung Foundation, AstraZeneca, Boehringer Ingelheim, and Stichting Astma Bestrijding, all outside the submitted work. FMEF reports grants and personal fees from AstraZeneca, personal fees from Boehringer Ingelheim, personal fees from Chiesi, personal fees from GlaxoSmithKline, grants and personal fees from Novartis, and personal fees from TEVA, outside the submitted work. RP reports personal fees from MEDtalk and Health Investment. DJAJ has received lecture fees from Chiesi and Boehringer Ingelheim in the last 3 years, which are unrelated to this paper. All other authors declare that they have no conflicts of interest. No financial support was received for the preparation of this manuscript.

Figures

Figure 1
Figure 1
Prevalence and change in fatigue in patients with long COVID who have confirmed COVID-19, measured using the CIS-Fatigue scale at on average 10 (T1) and 23 (T2) weeks after onset of symptoms (n=239). The width of the lines is proportional to the flow rate. No significant change in the prevalence of normal (≤26 points), mild (27-35 points), or severe (≥36 points) fatigue was found between T1 and T2 (McNemar-Bowker test, P=.12). CIS-Fatigue: Checklist Individual Strength–subscale subjective fatigue; T1: time of completing the first survey; T2: time of completing the second survey.
Figure 2
Figure 2
The distribution of patients with long COVID who have confirmed COVID-19 across the spectrum of self-constructed mental (left) and physical (right) fatigue at on average 10 (T1) and 23 (T2) weeks after onset of symptoms (n=239). Scores range from 3 to 21 points, and higher scores indicate higher levels of fatigue. T1: time of completing the first survey; T2: time of completing the second survey.
See this image and copyright information in PMC

References

    1. Docherty AB, Harrison EM, Green CA, Hardwick HE, Pius R, Norman L, Holden KA, Read JM, Dondelinger F, Carson G, Merson L, Lee J, Plotkin D, Sigfrid L, Halpin S, Jackson C, Gamble C, Horby PW, Nguyen-Van-Tam JS, Ho A, Russell CD, Dunning J, Openshaw PJ, Baillie JK, Semple MG, ISARIC4C investigators Features of 20 133 UK patients in hospital with covid-19 using the ISARIC WHO Clinical Characterisation Protocol: prospective observational cohort study. BMJ. 2020 May 22;369:m1985. doi: 10.1136/bmj.m1985. http://www.bmj.com/lookup/pmidlookup?view=long&pmid=32444460 - DOI - PMC - PubMed
    1. Carfì A, Bernabei R, Landi F. Persistent symptoms in patients after acute COVID-19. JAMA. 2020 Aug 11;324(6):603. doi: 10.1001/jama.2020.12603. - DOI - PMC - PubMed
    1. 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. doi: 10.1016/S0140-6736(20)32656-8. http://europepmc.org/abstract/MED/33428867 S0140-6736(20)32656-8 - DOI - PMC - PubMed
    1. Goërtz YMJ, Van Herck M, Delbressine JM, Vaes AW, Meys R, Machado FVC, Houben-Wilke S, Burtin C, Posthuma R, Franssen FME, van Loon N, Hajian B, Spies Y, Vijlbrief H, van 't Hul AJ, Janssen DJA, Spruit MA. Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome? ERJ Open Res. 2020 Oct;6(4):00542-2020. doi: 10.1183/23120541.00542-2020. http://europepmc.org/abstract/MED/33257910 00542-2020 - DOI - PMC - PubMed
    1. Mahase E. Covid-19: What do we know about "long covid"? BMJ. 2020 Jul 14;370:m2815. doi: 10.1136/bmj.m2815. - DOI - PubMed

Publication types