https://www.tandfonline.com/doi/full/10.1080/21641846.2024.2303887 Review Article A systematic scoping review of how people with ME/CFS use the internet Diane Shortland , Qulsom Fazil , Anna Lavis & Nutmeg Hallett Received 03 Nov 2023, Published online: 19 Jan 2024 ABSTRACT Purpose Myalgic Encephalomyelitis (ME) is a chronic neurological illness also known as Chronic Fatigue Syndrome (CFS). Key symptoms are extreme fatigue, post-exertional malaise, cognitive problems and sleep disturbance. With reported higher levels of online activity for people with ME/CFS than other conditions, more knowledge of characteristics and experience of online use in everyday life is needed. This scoping review systematically identified, appraised and synthesised what is known on how people with ME/CFS use the internet. Method The following bibliographic databases were searched: Embase, Medline, PsychINFO, Cinahl, AMED, and ASSIA, plus Web of Science, ProQuest Dissertations & Theses Global, Scopus, and Google Scholar for grey literature. Two reviewers independently screened title-abstracts, and full text of studies against inclusion criteria. Remaining studies were quality-assessed using appropriate critical appraisal tools. Results Many people with ME/CFS go online daily to gain information and share experiences of their illness including difficulties with family, friends and doctors. Reciprocity of emotional and social support was found with a sense of in-group belonging and empowerment. Validation was sought online, and identity renegotiation took place. Some replacement of offline social support for online engagement was reported. Online lay expertise was seen to improve offline health professional relations but not replace them. Conclusions The internet is a valued source of support for people with ME/CFS in terms of sharing of experiences, legitimacy, empowerment, and integration into people’s everyday lives. The extent of interrelating of online and offline lives is not clear however and needs further investigation. KEYWORDS: Myalgic encephalomyelitis chronic fatigue syndrome internet use social support online
Author name, Nutmeg Hallet. What a lovely first name. Basil Rathbone. Thyme Somebody, Father Thyme Others...?
Rosemary, Fennel, Coriander? Clovis is a name, though I've never heard Cloves. And some cultural icon is bound to have named their son Mint...
