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

Figures & data

Table 1. Search strategy example for web of science.

Population	‘ME’ OR ‘M.E.’ OR ‘Myalgic Encephalomyelitis’ OR ‘CFS’ OR ‘Chronic Fatigue Syndrome’ OR ‘ME/CFS’ OR ‘CFS/ME’
and
Concept of interest	Online OR ‘online us*’ OR ‘online activit*’ OR ‘online platform’ OR ‘online discussion’ OR ‘online social media’ OR ‘online communit*’ OR ‘online social network’ OR ‘online group’ OR ‘online health communit*’ OR ‘online support’ OR ‘online peer-to-peer’ OR ‘online user experience’ OR ‘online virtual’ OR internet OR ‘internet us*’ OR ‘internet activit*’ OR ‘internet discussion’ OR ‘internet communit*’ OR ‘internet-based’ OR ‘internet forum’ OR ‘internet communication’ OR ‘internet group’ OR ‘internet support’ OR ‘internet peer-to-peer’ OR ‘internet user experience’ OR ‘internet virtual’ OR Facebook OR YouTube OR gaming OR Instagram OR TikTok OR ‘message boards’.

Figure 1. Prisma flow chart of scoping review process.

Table 2. Study characteristics, quality assessment & results.

Author Year Country	Publication Type	Participant Characteristics	Area of Focus	Study Design	Quality Rating	Findings			Recommendations
						Usage	Experience	Offline Inter-Linking
Bates 2018 Spain	Book chapter	89 people’s unsolicited narratives, accounts and testimonies on CFS and other contested illness internet forums – 29 have CFS, 32 Eating Disorders, 28 Borderline Personality Disorders	Evidential mechanisms used in illness narratives to perform self and identity	Qualitative – Classification or evidential strategies used in narrative to talk of the self – Discourse psychological framework	3	Personal accounts of detailed descriptions of perceptions and sensations as direct physical evidence of illness-narrative content that contains medical prose.	Balances the articulation of sick self against cultural definitions of what legitimate illness is. As part of the narrative members learn to accept the condition and renegotiate a new identity in harmony with their new limitations.		Greater understanding of this dynamic when attempting constructive communication and improving the doctor – patient relationship
Best, Butler 2013 Australia / UK	Journal	Users of the ‘Second Life’ virtual platform diagnosed as having ME / CFS	Communication breakdowns of human –computer interactions	Qualitative, interviews with focus groups over 2 years, participant observation and questionnaires	2	Use of a virtual platform	Communication disruption in utilising platform: Fatigue and glare issues – Used adapted strategies to take back control of use – Preferred audio communication.		Investigate technical issues further to avoid users disconnecting from online platforms
Brady 2015 UK	PhD Thesis	CFS / ME & Diabetes types 1 & 2 75% Females 36–45 or 56–65 All white 70% of ME / CFS were educated to degree level	Trust, empowerment and identity online in forums	Semi-structured interviews with Vignettes – Qualitative	5	Sharing information and experience – Reciprocating support	Build trust in fellow users by credibility of shared info. Gained emotional support to become empowered. Renegotiated illness identity. Value in publicity describing daily reality. Internet seen at times as lifesaving.	Used lay expertise to improve offline engagement with health professionals. Protected online persons to remain anonymous offline. Vented to fellow users with similar attitudes but valued both online and offline support.	Digital divide and online literacy – Application of sociology in ongoing technical research. Examine concerns of health professionals about online support and lay individual knowledge – Is there a commercial market for translation of forum knowledge into print?
Brady, Segar, Sanders 2016 UK	Journal	41 participants (20 have ME, 21 diabetes) Recruited via online and offline routes. Majority Female - Mean age 50 White; 71% higher education degree	Negotiating privacy and trust in online forums	Qualitative semi-structured interviews, recruited via online and offline routes. Thematic analysis	3	A ‘safe space’ to access support away from real-life networks value sharing daily life within a public arena.	Carefully manage how they present themselves fitting into creating an ‘online persona’ View forums as public so concern for less savvy members.	Careful to maintain anonymity from their public offline lives.	Notion of sharing experiences could increase health professionals' understanding and lead to improved healthcare / potential benefits of people accessing online support. Digital divide – Those less confident in abilities to navigate social media are less likely to engage in technology for support.
Brady, Segar, Sanders 2016	Journal	41 participants (20 have ME, 21 diabetes) Recruited via online and offline routes. Majority Female - Mean age 50 White 71% higher education degree	Perceptions of privacy on online forums	Qualitative semi-structured interviews, recruited via online and offline routes. Thematic analysis	3	Forum members interact giving sensible / trustworthy advice to gain credibility – Sharing info of diagnosis, treatments etc – Shared perspectives, support through sharing day-day living.	Develop relationships online and gradually determine whether to trust fellow posters, build up trusted support networks	Support in managing daily living was unique to online support and couldn’t be provided by healthcare professionals but did not replace traditional existing support services.	Digital divide in using the internet for beneficial support
Brewer, Stratton 2020 UK	Journal	Discussion forum Reddit – First 50 posts that met inclusion criteria	Journal	Qualitative – Inductive thematic analysis	3	Video-calling friends and family during the pandemic.	4 themes of lived experience during the pandemic: symptom change, positive consequences as a potential catalyst for societal change, comparing experiences (have learnt skills that healthy people don’t) = Social interactions.	Enjoyment of non-face to face contact vs video calls – Recognised this change in interaction style was likely to be temporary and commented on it being hard to know but they don’t need to be as isolated as they are.	Employers should be encouraged to apply the experience of supporting remote working to support disabled employees. Further study should address use of Zoom and Teams and promote naturalistic interaction.
Cromby 2015 UK	Book Chapter	18 websites on ME / CFS	Website content contributes to the ‘Making Up’ of people with ME / CFS	Study and analyse how website material is presented, constructed, and organised to produce meanings and how this might be taken up by people and contribute to the kind of people they become. Identify clusters of shared meanings / ways of being associated with diagnosis.	2		Internet contributes to the ‘making up’ of practices of monitoring of somatic symptoms, pre-emptive defensiveness and experiential regulation, creating projection of uncertainty, disparaging attitudes towards professionals and deliberate managing of relationships limiting exposure to activities that exacerbate symptoms.		Patients may be seen as self-centred complainers and may therefore be met with scepticism (self-monitoring), pre-emptive defensiveness may introduce tension on both sides of encounter, and pains and fatigue may become products of misery that could be framed as depression – Stereotypes of ME / CFS might be accounted for on the basis of people’s quite reasonable responses to their condition.
Davison, Pennebaker 1997 USA	Book Chapter	6 online support groups (CFS, heart disease, breast cancer, prostate cancer, arthritis, and diabetes) 3062 posts over 2 weeks 91% women	Social and linguistic dynamics of illness representations	Newsgroups, text analysis, computer programmes that study emotions, cognitive mechanisms, content domains and language composition.	4	CFS had higher rates of participation than all other illness groups combined. CFS online support group posts had significantly more insight (or self-reflection and higher thinking) And significantly less casual words – Had most rigidly defined boundaries about illness prototypes.			Setting up local online groups could facilitate communication among local support groups and enhance their effectiveness – Internet as an exchange forum will serve to demystify the doctor – patient exchange
Floyd 2000 USA	Magazine Article	1 x housebound woman diagnosed with ME	Experience of going online for ME-related support	Single case study 1 x person account	N/A
Kennedy 2014 UK	PHD Thesis	59 posters on ‘Action for ME’ Forum	Social identities of online forum users	Discourse analysis and social identity theory analysis of 41 communication threads over 6 weeks on forum.	5	Forum: Shared experience responding to others’ posts	‘In group’ identities of being seriously ill	Online identity prioritised over social identities of family/friends and doctors.	NHS could provide online systems for peer interactions to aid a sense of agency and encourage an identity of being knowledgeable and supportive – Acceptability of psychological treatment implications.
Knudsen et al. 2012 Norway	Journal	12 condition-related online discussion forums. (2 were on ME/CFS)	Level of online activity of different conditions including ME/CFS	Observational – Measured number of registered users and number of posted messages on discussion forums – Used point prevalence estimates of each disorder to allow for comparison.	1	ME forums have 10 x the activity of any other condition-related forum measured and the highest number of registered users.			More knowledge needs on the type and quality of info provided in online forums as very little is known about the way patient groups utilise the internet – Examine the level of activity and quality of info provided online. Should be examined as could have both beneficial and harmful influence on health behaviour.
Lian, Grue 2017 Norway	Journal	14 websites for people with ME who use the internet to engage with other sufferers.	Exploring an online social movement community – Mobilisation process	Qualitative, analysis of 2 internet sites	3	Social movement Online empowerment	Collective action and identity, shared experience, motivational, informative		Greater understanding of this dynamic when attempting constructive communication and improving the doctor – patient relationship
Lian, Nettleton 2015 Norway	Journal	14 internet forums consisting of 10 blogs and 4 Facebook pages 13 sites run by women, 1 by a man. 12 were run by identified ME sufferers	Social construction of a social movement online community	Identify discursive domains on websites by categorising viewpoints and topics discussed – Selected 2 of the 14 sites by discarding repetitive ones. Analysis presented the salient features of the texts by studying linguistic tropes – discursive – narrative approach, content analysis.	4	Contribution of forum posts adhering to a shared definition of health professionals' failings to see the true somatic origin of the disease. Text addressed to those already acquainted to the ME debate. Silent rhetoric devise of ‘we’ ‘they’	Internet forums construct online social movement communities, a counter-power that contests the medical power, stands as a group to fight against psychogenic explanations.
Morehouse et al. 2021 USA	Journal	76 participants from 18 online support groups 67.1% were between 41 and 70 years old. 90% were female. 50% diagnosed over 11 years ago. 45% diagnosed in last year. 64.4% been involved in online support groups for 4 + years.		Online survey – Qualitative – Quantitative questions. Closed questions ofimpact of depression, anxiety and quality of life analysed using measures of central tendency – Frequency distributions. Open ended questions were analysed via coded themes.	2	88% engaged in online groups at least once a week. 50% did daily reading of others posts, posting medical info, encouragement of others, sharing personal stories and commenting on members' posts.	Participation in online support appears to decrease depression, increase quality of life and have no significant impact on anxiety. 75% increased satisfaction with daily life. 59.2% increased self-esteem, 63.1% happier, 92% improved feelings of having social support, 88.1% increased ability to cope with ME / CFS. Open ended questions: Participants gained sense of purpose in being able to help others, increased feelings of validation. One third indicated they had negative feelings because of comments from members.		Knowledge can aid healthcare professionals in making evidence-based recommendations regarding appropriateness of online support groups – Look at online as tool for providing social support – Individual characteristics – Personality traits – These factors are likely to have positive vs negative experience of online support.
Murray 2016 UK	PhD Thesis	Facebook Group Members	Identity and effect of social media support	Qualitative – posted on Facebook group asking questions.	5	Shared experiences, help others.	Renegotiation of identity through Facebook use – Gain purpose and meaning		Explore relationship between social media and quality of life in lived experience of chronic illness
Murray, Turner 2021 UK	Journal	Closed Facebook Group	Using communities of practice theory to understand the crisis of identity in CFS / ME	Timeline activity and ‘Twenty Statement Test’ and online group conversation surrounding participants’ lived experience. One insider researcher, one outsider. Thematic analysis of data collected from Facebook page.	3	Enables community, offers acceptance, support and familiarity, moving people into full participation again.	Thematic analysis of Facebook group found 4 themes: Loss of communities and identities, interrupted futures, living with disbelief and finding communities – Users accepted and adapted to CFS/ME identities, renegotiating their previous stigmatised identity.		Support group participation offers a useful tool to broaden and facilitate understanding and change in practices, involving families or primary care workers to create a platform for positive change (importance of supportive communities to find a new way to be in the world).
Sanchez 2019 USA UK Australia	Book Chapter	Sample of 22 blogs Case studies from 5 individuals: 2 American, 2 English, 1 Australian 4 Females, 1 Male 1 = 20 Years old, rest in their mid-40’s /50’s Majority had obtained a bachelor’s degree.	Exploration of illness stories through blogging	Thematic coding	3	Blogging of day to day happenings	Helped to ground CFS sufferers by providing biological legitimacy. Challenged medical expertise – Re-examine who they are – Appreciation of what illness has taught them.		Blogs could be used for sites of resistance and social change by providing space where counter narratives can be constructed and circulated.
Tian et al. 2009 USA	Journal	CFS website over 18-month period	Utilisation of a CFS website, outcomes and user behaviour of a campaign	Extracted page views, visits, referring domains and geographic locations – Market basket analysis and market chain model techniques to describe user behaviour.	3	6000 page views a day to official USA CFS website. 20% of traffic came from foreign countries. US states with formal CFS programmes had higher visitor density to the website. New publications were most viewed.	Public awareness campaign associated with a sharp increase in traffic and then, a subsequent drop. A shift to more health professional visitors during the campaign.		CFS website is an effective way of providing CFS health education and information and could continue to serve as an important tool in public health outreach. Public health programmes should consider analytical methods to understand user characteristics and this study provides valuable info in construction for a new website.
Ytre-Arne 2016 Norway	Journal	10 bloggers, 8 were International	Meanings of social media use – identity and participation	Qualitative analysis of interviews	3	Blogging. Contribute to public debate on health and welfare. Facebook seen as most desirable social support avenue (blogs seen as of the past and Twitter's form and pace is not suitable).	Provides a meaning-making and pressure relieving outlet. Positioning of self in social contexts is crucial as is a loss of ordinary contact – Online participation replaces lack of social participation – Social media is an arena for mobilisation and patient activism through empowerment and agency.	Social support replaces some of what they are missing in terms of participation, but it’s perceived as limited compared to richness of face-to-face interaction.	Significance of internet in contemporary society (Participation in social media closely interlined with personal aspects of managing identity disruption). Meanings of social media use not merely in participation terms – Connections between individuals and societal systems.

Quality Rating: 1 = poor or absent design and analysis with only brief discussion of findings, and no ethics or bias mentioned. 5 = thorough methodology, analysis, findings, and discussion, with good awareness of bias, ethics and implications.

Table

Authors	Clear statement of aims of research?	Appropriate qualitative methodology?	Research design appropriate to address aims of research?	Recruitment strategy appropriate to aims of research?	Data collected in way to address the research issue?	Relationship between researcher & participant adequately considered?	Ethical issues taken into consideration?	Data analysis sufficiently rigorous?	Clear statement of findings?	Is ME research valuable?	Researcher Comments
Bates 2018	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	Online narratives give rich qualitative data. Justified research design methodology. Explicit data extraction phrases. Influence of researcher role on data analysis not mentioned. Discussed results that surprised researchers. Credibility not mentioned. Impact of results not discussed.
Best & Butler 2013	Yes	Yes	Unclear	Unclear	Yes	No	Unclear	No	Yes	Yes	Research design was not justified but appears appropriate. No discussion around recruitment, no mention of researcher influence. Ethical issues only discussed in term of participant anonymity. No explanation of how data analysis was undertaken. Findings clearly stated in relation to original question but no discussion of credibility of results.
Brady2015	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Methods explicitly justified, good consideration of researcher bias. Data collection described in detail. Any contradictory data are not mentioned. Findings clear and detailed with relevance to existing literature. Discussion of surprising results. Good awareness of study limitations and implication for further study.
Brady, Segar& Sanders2016	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	Yes	Brief explanations but justified in methodology and recruitment and demographic info. Researcher bias not considered. Detailed data analysis processes. Findings discussed in relation to other research. Transferability outside of sample population discussed.
Brady, Segar& Sanders 2016	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	Yes	Brief but justified explanations of methodology and recruitment and demographic info. Detailed data analysis. Researcher bias not considered. Findings discussed in relation to previous studies. Implication of findings discussed in detail.
Brewer & Stratton 2020	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Unclear	Yes	Yes	Detailed selection process of inclusion criteria. Data analysis only briefly mentioned. No consideration of researcher bias in analysis of results. Findings clearly explained and summarised. Discussion of existing studies to contextualise findings but no demographics so cannot generalise results to wider CFS community.
Cromby 2015	Yes	Yes	Yes	Yes	Unclear	No	No	No	Yes	Yes	Methodology is not explained, justification of sample use but no detail at all of data collection or analysis procedures. Implications of findings discussed and impact on patient and health professional relationships. Provides new and original knowledge but evidence for its theories are not explicit enough to carry weight.
Davision & Pennebaker 1997	Yes	Yes	Yes	Yes	Yes	No	No	Yes	Yes	Yes	Data collection clearly described. Detailed description of issues and ways to assess and overcome risk. Credibility of findings discussed. Good discussion of implications and limitations of findings.
Floyd 2000	Yes	Yes	Yes	N/A	N/A	N/A	N/A	N/A	Yes	Yes	A single 1st person qualitative individual case study article. Experimental study of going online for support after diagnosis. Gives good snapshot account of how the internet aided daily living for housebound suffererer over 2 decades ago.
Kennedy 2014	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Awareness and discussion of limitations of study. Discusses results in relation to previous findings and hasclearly detailed methodology. Awareness of bias and attempts to overcome it. Detailed analysis procedures. Thorough write up of study.
Lian & Grue 2017	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	Yes	Discussed disadvantages of narrated sample but justified its use. 2 of 10 texts chosen to highlight the communicative strategies researchers visited so much data discarded but described process of iterative analysis. Detailed ethics discussion. Findings discussed in relation to their social functions, loss, variation and wider belonging.
Lian & Nettleton 2015	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	Yes	Drawbacks of sample selection referred to. Detailed step by step account of data collection and analysis. Data analysis was layered and opened up to wider movements in society. Identified inclusion criteria. Implications to health practitioners with insight improving relationships but precarious position of risk of becoming oppositions only.
Murray 2016	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Recruitment explained in detail. Methods explicit and guided by ongoing and modified results. Research approach with potential bias considered. Detailed methodical data analysis. Findings detailed and consideration to limitations and surprises of the study. Future research recommendations.
Murray & Turner 2021	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Unclear	Yes	Yes	Insider research role discussed. Research design carefully thought out plus awareness of enabling practices in mind given nature of ME/CFS illness. Awareness of researcher presence and implications of this. Data analysis is not explained in any great detail. Findings clear but backed by minimal qualitative data in form of example. Value of research for reconsiderations of health profs to shift social constructions of illness and facilitate change in practice. Importance of supportive communities as strategy.
Sanchez 2019	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	Yes	No justification of research design but detailed description of the process. Researcher bias risk not mentioned. Data analysis explained. Good discussion of findings in relation to research questions. Implications of new knowledge stated but no future research suggested.
Ytre-Arne 2016	Yes	Yes	Yes	Yes	Yes	No	Yes	Yes	Yes	Yes	Detailed inclusion criteria of participation selection and good consideration of the ethics of illness limitations but no details of analysis of data. Researcher bias not mentioned. Meaning of findings in wider dominant narratives of society discussed. Transferability of results not mentioned.

Data availability statement

Open access. Study available by contacting lead author.