Table 1. Questioning route.

Topic	Question(s)	Probe(s)
Introduction Researchers introduce themselves and the moderator. The researcher explains the purpose and format of the session. The researcher provides the group with ground rules for the duration of the focus group.	One at a time, can each of you say aloud your name and something about yourself? For example, my name is X and I am from Y. Let’s start to my right.	Where are you from?
Health and social care costs Researcher defines what is meant by health and social care costs.	When and how were you given a diagnosis of ME/CFS? What types of health and social care services do/have you use(d)? What types of treatments do/have you use(d)? What are the costs for your care and treatments? Have you faced barriers in terms of accessing treatments/ supports/services?	How long did it take you to get a diagnosis? Number of health care professionals you have dealt with? Are there good treatments available for you? Health care professionals understanding of ME/CFS? From where do you get information on ME/CFS?
Costs to individuals and the economy Researcher defines what is meant by costs to individuals and to the economy.	Has ME/CFS impacted your ability to work? Has ME/CFS impacted your education? Has ME/CFS impacted your standard of living?	Employment situation prior to ME versus now? Reduced hours? PT/FT? Left job? Missed out on promotion? Early retirement? Impact on future prospects? Employers/educators knowledge of ME/CFS?
Family members and carers Researcher describes potential costs that can arise to family members and informal carers.	How much time do you give to caring activities? Has caring impacted on your ability to work? Has caring impacted your own health and wellbeing?	What aspects of caring for someone with ME are challenging?
Welfare payments and supports Researcher discusses welfare payments and supports.	What supports (financial or otherwise) do you receive? Any issues accessing supports?	Have you applied for social welfare payments as a direct result of your ME/CFS?
Other issues Have we missed anything?	Any other relevant costs?	Do you face extra costs of living due to ME/CFS?
Conclusion Plan is to use the findings from these FGs in future research. We are thinking about undertaking a national study on the burden of ME/CFS and interested in your views on how best to do this?	What are your thoughts on such a study? Would you be willing to complete a potentially long survey questionnaire and how?	Mail v online v face-to-face? Interviews better?