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

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.

Source: Diane ShortlandQulsom FazilAnna Lavis & Nutmeg Hallett (2024) A systematic scoping review of how people with ME/CFS use the internet, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2024.2303887  (Full text)

Validation of biologic markers for use in research on chronic fatigue syndrome

Abstract:

Unresolved aspects of chronic fatigue syndrome can be addressed by research involving biologic markers. These may be any molecular, biochemical, physiological, or other biologic parameter obtainable from biologic specimens. The use of biologic markers in research requires their validation as dependent or independent variables. Additionally, other characteristics of markers such as reliability of assays, background level, confounding factors, interpretations, and legal and ethical implications should be considered before the use of markers in research. A checklist is provided for evaluating a biologic marker before its inclusion in research.

 

Source: Schulte PA. Validation of biologic markers for use in research on chronic fatigue syndrome. Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S87-9. http://www.ncbi.nlm.nih.gov/pubmed/2020808