1,670
Views
0
CrossRef citations to date
0
Altmetric
Review Article

A systematic scoping review of how people with ME/CFS use the internet

, , &
Pages 142-176 | Received 03 Nov 2023, Published online: 19 Jan 2024

References

  • Action for ME. 2022. What is M.E.? See https://www.actionforme.org.uk/get-information/what-is-me/what-does-me-feel-like/.
  • Grue J. A garden of forking paths: a discourse perspective on ‘Myalgic Encephalomyelitis’ and ‘Chronic Fatigue Syndrome’. Crit Discourse Stud. 2014;11:35–48. doi:10.1080/17405904.2013.829114
  • Jason LA K, Sunnquist B, et al M. Chronic fatigue syndrome and myalgic encephalomyelitis: towards an empirical case definition. Health Psychol Behav Med. 2015;3(1):82–93. doi:10.1080/21642850.2015.1014489
  • Kingod C, Bowman E, Curran H, et al. Functional status and well-being in people with myalgic encephalomyelitis/chronic fatigue syndrome compared with people with multiple sclerosis and healthy controls. PharmacoEconomics - Open. 2018;2:381–392. doi:10.1007/s41669-018-0071-6
  • Hvidberg F, Brinth M, Schouborg L, et al. The health-related quality of life for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PLoS One. 2015;10(7):e0132421.
  • Pendergrast T, Brown A, Sunnquist M, et al. Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome. Chronic Illn. 2016;12(4):292–307. doi:10.1177/1742395316644770
  • Clarke J, James S. The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Soc Sci Med. 2003;57:1387–1395. doi:10.1016/S0277-9536(02)00515-4
  • McManimen S, McClellan D, Stoothoff J, et al. Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. J Community Psychol. 2018;46(8):959–971. doi:10.1002/jcop.21984
  • Harris K, Band R, Cooper H, et al. Distress in significant others of patients with chronic fatigue syndrome: a systematic review of the literature. Br J Health Psychol. 2016;21:881–893. doi:10.1111/bjhp.12202
  • Bowling A. Measuring health: a review of quality of life measurement scales. Maidenhead: Open University Press; 2005.
  • Action for ME.: Five year Big Survey. 2019. Available from: http://actionforme.org.uk/research-and-campaign/five-year-big-survey/ [Accessed 9th August 2022].
  • Edwards CR, Thompson AR, Blair A. An ‘overwhelming illness: women’s experiences of learning to live with chronic fatigue syndrome/myalgic encephalomyelitis’. J Health Psychol. 2007;12(2):203–214. doi:10.1177/1359105307071747
  • Ytre-Arne B. The social media experiences of long-term patients: illness, identity, and participation. Nordicom Review. 2016;37(1):57–70. doi:10.1515/nor-2016-0002
  • Van der Eijk M, Faber M, Aarts J, et al. Using online health communities to deliver patient-centered care to people with chronic conditions. J Med Internet Res. 2013;15(6):e115. doi:10.2196/jmir.2476
  • Lian O, Nettleton S. United we stand: framing myalgic encephalomyelitis in a virtual symbolic community. Qual Health Res. 2015;25(10):1383–1394. doi:10.1177/1049732314562893
  • Lasker JN, Sogolow ED, Sharim RR. The role of an online community for people with a rare disease: content analysis of messages posted on a primary biliary cirrhosis mailing list. J Med Internet Res. 2005;7(1):e10. doi:10.2196/jmir.7.1.e10
  • Eichhorn K. Soliciting and providing social support over the internet: an investigation of online eating disorder support groups. J Comput Mediat Commun. 2008;14(1):67–78. doi:10.1111/j.1083-6101.2008.01431.x
  • Loane S, D’Alessandro S. Empowered and knowledgeable health consumers: the impact of online support groups on the doctor-patient relationship. Australas Mark J. 2014;22:238–245. doi:10.1016/j.ausmj.2014.08.007
  • Perkins V, Coulson NS, Davies EB. Using online support communities for tourette syndrome and TIC disorders: online survey of user’s experiences. J Med Internet Res. 2020;22(11):e18099. doi:10.2196/18099
  • Drentea P, Moren-Cross J. Social capital and social support on the web: the case of an internet mother site. Sociol Health Illn. 2005;27:920–943. doi:10.1111/j.1467-9566.2005.00464.x
  • Conrad P, Stults C, et al. The internet and the experience of illness. In: Bird CE, Conrad P, Fremont AM, editors. Handbook of medical sociology. 6th ed. Nashville: Vanderbilt University Press; 2010. p. 179.
  • Conrad P, Bandini J, Vasquez A. Illness and the internet: from private to public experience. Health. 2016;20(1):22–32. doi:10.1177/1363459315611941
  • Lin TC, Hsu JSC, Cheng HL, et al. Exploring the relationship between receiving and offering online social support: a dual social support model. Inf Manag. 2015;52(3):371–383. doi:10.1016/j.im.2015.01.003
  • Maier C, Laumer S, Eckhardt A, et al. Giving too much social support: social overload on social networking sites. Eur J Inf Syst. 2015;24(5):447–464. doi:10.1057/ejis.2014.3
  • Beck LS, Gurion B, Sheva B. Internet ethnography: online and offline. Int J Qual Methods. 2004;3(2):45–51. doi:10.1177/160940690400300204
  • Kingod N, Cleal B, Wahlberg A, et al. Online peer-to-peer communities in the daily lives of people with chronic illness: a qualitative systematic review. Qual Health Res. 2017;27(1):89–99. doi:10.1177/1049732316680203
  • Allen C, Vassilev I, Kennedy A, et al. The work and relatedness of ties mediated online in supporting long-term condition self-management. Sociol Health Illn. 2020;42(3):579–595. doi:10.1111/1467-9566.13042
  • Chung J. Social interaction in online support groups: preference for online social interaction over offline social interaction. Comput Human Behav. 2013;29:1408–1414. doi:10.1016/j.chb.2013.01.019
  • Cummings J, Sproul L, Kiesler S. Beyond hearing: where the real-world and online support meet. Group Dyn. 2002;6(1):78–88. doi:10.1037/1089-2699.6.1.78
  • Moorhea S, Hazlett D, Harrison L, et al. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res. 2013;15(4):e85. doi:10.2196/jmir.1933
  • Huan K, Chengalur-Smith I, Ran W. Not just for support: companionship activities in healthcare virtual support communities. Commun Assoc Inf Syst. 2014;34(1):561–594.
  • Kummervold P, Gammon D, Bergvik S, et al. Social support in a wired world: use of online mental health forums in Norway. Nord J Psychiatry. 2002;56(1):59–65. doi:10.1080/08039480252803945
  • Liemeister J, Schwiezer K, Leimester S, et al. Do virtual communities matter for the social support of patients? Antecedents and effects of virtual relationships in online communities. Inf Technol People. 2008;21(4):350–374. doi:10.1108/09593840810919671
  • Caplan SE. Preference for online social interaction: a theory of problematic internet use and psychological well-being. Communic Res. 2003;30(6):625–648. doi:10.1177/0093650203257842
  • Peters MDJ, Godfrey C, McInerney P, et al. Scoping reviews. In: Aromataris E, Munn Z, editors. JBI manual for evidence synthesis. 2020. Available from: https://synthesismanual.jbi.global.
  • Munn Z, Peters M, Stern C, et al. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18:143. doi:10.1186/s12874-018-0611-x
  • Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19–32. doi:10.1080/1364557032000119616
  • Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010;5:69. doi:10.1186/1748-5908-5-69
  • Joanna Briggs Institute. Critical Appraisal Tools. Available from: https://jbi.global/critical-appraisal-tools. [Accessed 20th June 2023].
  • Collins. 2022. Internet. Available from: www.collinsdictionary.com/dictionary/english/internet.
  • Kaplan AM, Haenlein M. Users of the world, unite! The challenges and opportunities of social media. Bus Horiz. 2010;53:59–68. doi:10.1016/j.bushor.2009.09.003
  • Tricco AC, Lillie E, Zarin E, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–473. doi:10.7326/M18-0850
  • Bramer WM, Rethlefsen ML, Kleijnen J, et al. Optimal database combinations for literature searches in systematic reviews: a prospective exploratory study. Syst Rev. 2007;6(245).
  • McColl MA, Shortt S, Godwin M, et al. Models for integrating rehabilitation and primary care: a scoping study. Arch Phys Med Rehabil. 2009;90(9):1523–1531. doi:10.1016/j.apmr.2009.03.017
  • Brien SE, Lorenzetti DL, Lewis S, et al. Overview of a formal scoping review on health system report cards. Implement Sci. 2010;5(1):2. doi:10.1186/1748-5908-5-2
  • Grant M, Booth A. A typology of reviews: an analysis of 14 review types and associated methodologies. Health Inf Libr J. 2009;26(920):91–108. doi:10.1111/j.1471-1842.2009.00848.x
  • Daudt HML, van Mossel C, Scott SJ. Enhancing the scoping study methodology: a large, inter-professional team’s experience with arksey and O’Malley’s framework. BMC Med Res Methodol. 2013;13:48. doi:10.1186/1471-2288-13-48
  • Critical Appraisal Skills Programme. CASP Qualitative Checklist. 2018. Available from: https://casp-uk.b-cdn.net/wp-content/uploads/2018/03/CASP-Qualitative-Checklist-2018_fillable_form.pdf. [Accessed 9th August 2022].
  • Mixed Methods Appraisal Tool. MMAT Mixed Methods Checklist. 2018. Available from: http://mixedmethodsappraisaltoolpublic.pbworks.com/w/page/24607821/FrontPage. [Accessed 20th June 2023].
  • Bates C. Performing the self in illness narratives. The role of evidentiality. In: Bates, Nebot, editors. Perspectives on evidentiality in Spanish: exploration across genres. John Benjamins; 2018. p. 73–106.
  • Davison K, Pennebaker J, Dickerson S. Who talks? The ocial psychology of illness support groups. Am Psychol. 2000;55(2):205–217. doi:10.1037/0003-066X.55.2.205
  • Lian O, Grue J. Generating a social movement online community through an online discourse: the case of myalgic encephalomyelitis. J Med Humanit. 2017;38:173–189. doi:10.1007/s10912-016-9390-8
  • Murray R, Turner L. Living with chronic fatigue syndrome during lockdown and a global pandemic. Fatigue: Biomed Health Behav. 2021;8(3):144–155.
  • Sanchez M. Sick and tired: narratives of contested illness in chronic fatigue syndrome blogs. In: Green S, Loseke D, editors. New narratives of disability: constructions, clashes, and controversies. Bingley: Emerald; 2019. p. 245–260.
  • Best K, Butler S. The necessity of control for computer and internet users with myalgic encephalomyelitis/chronic fatigue syndrome. Inf Commun Soc. 2013;16(7):1042–1060.
  • Brady B. 2015. Trust, empowerment, and identity online: a qualitative exploration of the use of Internet forums by individuals with long term conditions. The University of Manchester (UK).
  • Brady E, Segar J, Sanders C. “I always vet things”: navigating privacy and the presentation of self on health discussion boards among individuals with long-term conditions. J Med Internet Res. 2016a;18(10):e274. doi:10.2196/jmir.6019
  • Brady E, Segar J, Sanders C. “You get to know the people and whether they’re talking sense or not”: negotiating trust on health-related forums. Soc Sci Med. 2016b;162:151–157. doi:10.1016/j.socscimed.2016.06.029
  • Kennedy A. 2014. Exploring the online social identities of people with chronic fatigue syndrome/myaligc encephalomyelitis (CFS/ME): a discourse analysis approach. University of Exeter (UK).
  • Knudsen AK, Lervik LV, Harvey SB, et al. Comparison of chronic fatigue syndrome/myalgic encephalomyelitis with other disorders: an observational study. J R Soc Med Short Rep. 2012;3:32.
  • Tian H, Brimmer D, Lin JM, et al. Web usage data as a means of evaluating public health messaging and outreach. J Med Internet Res. 2009;11(4):e52. doi:10.2196/jmir.1278
  • Murray R, Day K, Tobbell J. Duvet woman versus action man: the gendered aetiology of chronic fatigue syndrome according to English newspapers. Fem Media Stud. 2019;19(2):890–905. doi:10.1080/14680777.2019.1595694
  • Morehouse S, Schaible K, Williams O, et al. Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey. Fatigue: Biomed Health Behav. 2021;9(2):113–122.
  • Murray R, Turner L. Using communities of practice theory to understand the crisis of identity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Chronic Illn. 2021;19(1):1–9.
  • Cromby J. The public meanings of CFS/ME: making up people. In: Ward C, editor. Meanings of ME: interpersonal and social dimensions of chronic fatigue. Basingstoke: Palgrave Macmillan; 2015. 129-151.
  • Floyd J. Internet plugged in. Accent on Living. 2000;44(4):28–28.
  • Brewer G, Stratton K. Living with chronic fatigue syndrome during lockdown and a global pandemic. Fatigue: Biomed Health Behav. 2020;8(3):144–155.
  • International Alliance for ME. Recognition, research and respect: an agenda for change in ME. 2018. Available from: https://www.actionforme.org.uk/uploads/images/2019/01/IAFME-recognition-research-respect-041218.pdf [Accessed 29th August 2023].
  • Capelli E, Lorusso L, Ghitti, M., Venturini, L , Cusa, C, Ricevuti, G. Chronic fatigue syndrome: features of a population of patients from Northern Italy. Int J Immunopathol Pharmacol. 2015;28(1):53–59. doi:10.1177/0394632015572074
  • Faro M, Saez-Franca N, Castro-Marrero J, et al. Gender differences in chronic fatigue syndrome. Reumatología Clínica. 2016;12(2):72–77. doi:10.1016/j.reuma.2015.05.007
  • Bowling A. Research methods in health: investigating health and health services. Fourth Edition Berkshire: Open University Press; 2014.
  • Bamdad S, Finaughty D, Johns S. ‘Grey areas’: ethical challenges posed by social media-enabled recruitment and online data collection in cross-border, social science research. Res Ethics. 2022;18(1):24–38. doi:10.1177/17470161211045557
  • Arigo D, Pagoto S, Carter-Harris L, et al. Using social media for health research: methodological and ethical considerations for recruitment and intervention delivery. Digital Health. 2018;4:205520761877175–15. doi:10.1177/2055207618771757
  • Quinton S, Reynolds N. The changing roles of researchers and participants in digital social media research: ethics challenges and forward directions. In: Woodfield K, editor. The ethics of online research. Leeds: Emerald; 2017. p. 53–78.
  • Chen Y, Chen C. Determining factors of participants’ attitudes toward the ethics of social media data research. Online Inf Rev. 2022;46(1):164–181. doi:10.1108/OIR-11-2020-0514
  • Woodfield K, Iphofen R. Introduction to volume 2: the ethics of online research. In: Woodfield K, editor. The ethics of online research. Leeds: Emerald; 2017. p. 1–12.
  • Colbert J, Yuan N, Agarwal P, et al. The promise of social media for health: a nationwide survey of primary care patients on usage patterns and attitudes. J Gen Intern Med. 2015;30:279–280.
  • Davison K, Pennebaker J. Virtual narratives: illness representations in online support groups. In: Petrie K, Weinman J, editors. Perceptions of health & illness. London: Harwood Academic Publishers; 1997. p. 463–486.
  • Anderson V, Jason L, Hlavaty L, et al. A review and meta-anaylsis of qualitative studies on myalgic encephalomylelitis/chronic fatigue. Patient Educ Couns; 2012;86:147–155.
  • Baken D, Harvey S, Bimler D, et al. Stigma in myalgic encephalomyelitis and its association with functioning. Fatigue: Biomed Health Behav. 2018;6(1):30–40. doi:10.1080/21641846.2018.1419553
  • Friedberg F, Leung D, Quick J. Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members. J Rheumatol. 2005;32:12.
  • Hwang K, Ottenbacker A, Lucke J, et al. Measuring social support for weight loss in an internet weight loss community. J Health Commun. 2011;16(2):198–211. doi:10.1080/10810730.2010.535106
  • Crabtree J, Haslam S, Postmes T, et al. Mental health support groups, stigma, and self-esteem: positive and negative implications of group identification. J Soc Sci. 2010;66(3):553–569.
  • Reeves D, Blickem C, Vassilev I, et al. The contribution of social networks to the health and self-management of patients with long-term conditions: a longitudinal study. PLoS One. 2014;9(6). doi:10.1371/journal.pone.0098340
  • Andreas A, Dhand A, Vassilev I, et al. Understanding online and offline social networks in illness management of older patients with asthma and chronic obstructive pulmonary disease: mixed methods study using quantitative social network assessment and qualitative analysis. JMIR Form Res. 2022;6(5):1.
  • Barg J, McKenna K, Fitzsimons G. Can You See the Real Me? Activation and Expression of the ‘True Self’ on the internet. J Soc Issues. 2002;58(1):33–48. doi:10.1111/1540-4560.00247
  • Ban R, Barrowclough C, Emsle R, et al. Significant other behavioural responses and patient chronic fatigue symptom fluctuations in the context of daily life: an experience sampling study. Br J Health Psychol. 2015;21:499–514.
  • Brooks B, Kanuika A, Kelliher Rabon J, et al. Social support and subjective health in fibromyalgia: self-compassion as a mediator. J Clin Psychol Med Settings. 2022;29:375–383. doi:10.1007/s10880-021-09832-x
  • Versaandonk J, Cenders M, Bleijenberg G, et al. The role of the partner and relationship satisfaction on treatment outcome in patients with chronic fatigue syndrome. Psychol Med. 2015;45:2345–2352. doi:10.1017/S0033291715000288
  • Brooks J, Daglish J, Wearden A. Attributions, distress and behavioural responses in the significant others of people with chronic fatigue syndrome. J Health Psychol. 2013;18(10):1288–1295. doi:10.1177/1359105312464670
  • Crump L, LaChapelle D. “My Fibro Family!” A qualitative analysis of Facebook Fibromyalgia support groups’ discussion content’. Canad J Pain. 2022;6(1):95–111. doi:10.1080/24740527.2022.2078183
  • Kingod N. The tinkering m-patient: co-constructing knowledge on how to live with type 1 diabetes through Facebook searching and sharing and offline tinkering with self-care. Health. 2020;24(2):152–168. doi:10.1177/1363459318800140
  • Lian O, Robson C. “It’s incredible how much I’ve had to fight”: negotiating medical uncertainty in clinical encounters. Int J Qual Stud Health Well-Being. 2017;12(1):1392219. doi:10.1080/17482631.2017.1392219
  • Jason L. Small wins matter in advocacy movements: giving voice to patients. Leonard Am J Community Psychol. 2011;49(3):307–316.
  • Conrad B, Barker K. The social construction of illness: key insights and policy implications. J Health Soc Behav. 2010;51(1):S67–S79. doi:10.1177/0022146510383495
  • Bury M. The sociology of chronic illness: a review of research and prospects. Sociol Health Illn. 1991;13(4):451–468. doi:10.1111/j.1467-9566.1991.tb00522.x
  • Gilberg C. A troubling truth: chronic illness, participation and learning for change. The Centre for Welfare Reform. 2016. Available from: http://www.cenrteforwelfarereform.org/uplaods/attachment/509/a-troubling-truth.pdf [Accessed 19/9/23].
  • Frank A. The wounded storyteller: body, illness and ethics. Chicago (IL): The University of Chicago Press; 1995.
  • Whitehead L. Toward a trajectory of identity reconstruction in chronic fatigue syndrome/myalgic encephalomyelitis: a longitudinal qualitative study. Int J Nurs Stud. 2006;43:1023–1031. doi:10.1016/j.ijnurstu.2006.01.003
  • Groevelt I. “It’s not all nice and fun”: narrating contested illness on YouTube and Instagram. Health. 2022;26(5):589–604. doi:10.1177/13634593211017187
  • Stein J. From activist to ‘passivist’: where is the mass movement? In: Munson P, editor. Stricken voices from the hidden epidemic. Oxfordshire: Routledge; 2000. p. 163–172.
  • Khalafbeigi M, Yazdani F, Genis F, et al. Invisibility and diagnosis stigma: disabling factors for female adults with mylagic encephalomyelitis (ME/chronic fatigue syndrome (CFS) in a small-scale qualitative study in England. Ir J Occup Ther. 2023;51(2):52–59.
  • Vya J, Muirhead N, Sing R, et al. Impacts of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey. BMJ Open. 2022;12:e058128.
  • Brittain E, Muirhead N, Finlay A, et al. Myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS): major impact on lives of both patients and family members. 2021;57:43.
  • Yao T, Zheng Q, Fan X. The impact of online social support on patients’ quality of life and the moderating role of social exclusion. J Serv Res. 2015;18(3):369–383. doi:10.1177/1094670515583271
  • Brooks J, King N, Wearden A. Couple’s experiences of interacting with outside others in chronic fatigue syndrome: a qualitative study. Chronic Illn. 2014;10(1):5–17. doi:10.1177/1742395312474478