Table 2 Risk of bias of included studies

Anonymous 1997

High: Narrative of own story, detailed, personal and angry account

High: Reported without formal analysis

Asbring 2002, Asbring 2004

Medium: Case study; semi-structured interviews (60-150 minutes) to describe the Participants' encounters with their health care providers and possibilities of practicing the participants' power;

High: Thematic analysis using grounded theory, quotes presented

Ashby et al 2006

Medium: Case study; interviews and Likert-style rating scales

Medium: Content analysis; explicit interpretation by the authors, no quotes from participants

Blake 1993

High: Narrative of own story

High: Reported without formal analysis

Carlsen 2003

Medium: Case study; in depth interviews (open interview guide) plus observation of and participation in self help group meetings, plus data from health professionals and social workers,

High: Thematic analysis; quotes presented.

Clarke 1999, Clarke & James 2003

Medium: Case study; open-ended semi-structured telephone interview

High: Thematic analysis using constant comparative method, separately analysed for men and women; quotes presented.

Denz-Penhey 1993

High: Case study; participative action research with cycles of planning, action, observation and reflection with collaboration and participation of the participants; Interviews, statements, field notes, journal entries and questionnaires

Medium: ethnographic and action research; report of interpretation by the authors.

Dumit 2006

High This study drew on entries from internet newsgroup postings (180,000 internet entries), fieldwork and published debates; first person accounts, already in the public domain in internet newsgroups.

High. Thematic analysis conducted by the authors, early arguments submitted online and on scientific conferences and amended accordingly; quotes presented.

Edwards et al 2007

Medium: Case study; in-depth semi-structured interviews (1-1.5 hours)

High: Interpretative phenomenological analysis; quotes presented.

Garralda & Rangel 2004

Medium: Case study; semi-structured interviews with children with CFS and their parents (also children with arthritis and emotional disorders), and standard questionnaires. Note: This review used only the data on children with CFS/ME

Low: mostly statistical analysis of standardized questionnaire. (percentages and 3-group Kruskal-Wallis for categorical and Mann-Whitney for continuous data comparison).

Gray & Fossey 2003

Medium: Case study; semi-structured interviews (purposive sampling, videotaped interviews between participants and OTs, then individual interviews)

High: thematic analysis and quotes presented.

Green et al 1999

Low: Case study; postal standardised questionnaires on stigma, satisfaction in intimate relationships, labelling and symptoms' intensity.

Low: Statistical analysis (frequencies, percentages, correlations and Fisher's exact test)

Hammond 2002

High: Case study; in-depth interviews with claimants and non-claimants of DLA, combined with DLA data set and data from a survey with people with CFS/ME (posted questionnaires).

High: narrative analysis of in-depth interviews (quote reported); content analysis of DLA data set and posted questionnaires (percentages presented)

Hoad 1994

High: Detailed narrative of own story.

High: Reported without formal analysis

Horton-Salway 2004

High: Case study; naturalistic design, in-depth interview with a group member, and ethnographic observation of monthly meetings of a CFS support group and the talk to the group by a clinical psychologist.

High: Discursive analysis/thematic analysis; quotes reported.

Jackson 1994

High: Case study; in-depth interview

High: Discursive analysis; quotes reported.

Jason et al 1996

Moderate: Questionnaire sent out with the CFIDS Chronicle Journal containing open-ended questions on suggestions for improving services to people with CFS; standardized questionnaire on subjects' preferences on health services use (items developed from in-depth interviews).

Low: Descriptive statistics (frequencies, percentages, difference in means and standard deviations), factor analysis of the standardized questionnaire; quotes not reported.

Lee et al 2001

High: Case study; semi-structured interview, observational data and process notes over the course of the interviews, complementary quantitative data

High: Content and thematic analyses; quotes reported. Descriptive statistics of complementary data (percentages, means and standard deviations, medians),

Moore 2001

Medium: Single case study; data collection not reported; unclear whether data was collected via naturalistic observation or interview.

High: Narrative of the experience of a person with CFS/ME, reported by the researcher without formal analysis, with quotations.

Ong et al 2005

High: Case study; collaborative story-building of experience the development of GP-client relationship, based on own stories of a doctor and a client with CFS/ME.

High: Shared narrative of the experience by the two participants, commented by a researcher.

Prins et al 2004

Low: Posted questionnaires with closed questions and scales

Low: Means of social support compared between demographic and type of illness groups (CFS × others) and correlations. Changes in social support in a 14 month follow-up, MANOVA.

Rangel et al 2000

Moderate: Case study; case notes of 25 children with CFS/ME, followed by scales and semi-structured interviews with both children and parents.

Low: Description of mean and standard deviations; Mann-Whitney test, chi- square or Fish's exact tests to compare ill and recovered groups of children with CFS/ME

Reynolds & Vivat 2006

High: Case study; in-depth semi-structured interviews

High: Narratives analysis; quotes reported.

Richards et al 2006

High: Case study; tape recorded semi-structured interviews with 21 adolescents and their parents, carried out in the participants' houses.

High: content analysis with identification of themes; quotes reported.

Roche & Tucker 2003

High: Case study; questionnaires posted to young people with CFS/ME and their carers, one-to-one interviews with members of CFS/ME action group

High: Discourse analysis, quotes reported.

Schoofs et al 2004

Medium: Case study; semi-structured telephone interview and standard questionnaires of general health and health-related quality of life (SF36), quality of life questionnaire and perceived social support (PSSS).

High: Thematic analysis and descriptive categories using a comparative approach between participants with quotes reported. Bivariate correlations between scores of the questionnaires

Schweitzer et al 1995

High: Case-control study of person with CFS/ME compared with 30 undergraduate controls; semi-structured interviews and standardised questionnaire about sickness impact 'Sickness Impact Profile'

Medium: Thematic analysis of qualitative data, no quotes from participants. (Statistical results did not refer to expressed needs and were not extracted)

Sutton 1996

High: Case study; semi-structured interview with patients and GPs.

High: content analysis of interviews to identify themes and descriptive categories (quotes reported)

Taylor & Kielhofner 2003

High: Case study; in-depth interview and standardised questionnaires

High: Clinical interpretation of the case using patient's life history and information provided by scales of the domains of the MOHO. (quotes reported)

Taylor 2004

Low: Randomised controlled trial using standardised measures about quality of life and symptom severity

Low: repeated measures of ANOVA and regression analysis using random-effects to compare program and control conditions for two outcomes: quality of life and symptom severity.

Weisstein 2006

High: Narrative of own story with detailed personal accounts presented, data not analysed, quotations reported

High: Reported without formal analysis

Whitehead 2006a; Whitehead 2006b)

High: Case study; three one-to-one unstructured interviews over 2.5 years.

High: (2006a) Hermeneutic phenomenological analysis, quotes reported. (2006b) Narrative analysis to identify typologies of restitution, chaos and quest; quotes reported.