Table 4 Examples of verbatim quotes that support the central and subthemes leading to an underestimate of prevalence of people with ME/CFS in Australia’s primary healthcare sector

Focus Group 1, Female with ME/CFS

To me the biggest issue here is that without a test for CFS we are stuck having to rule out everything else which takes a long time and then determining if you are experiencing sufficient symptoms to fit the criteria may also require some time given that the condition and the symptoms you experience fluctuate

Focus Group 2, Female with ME/CFS

Both the GPs I have had have been sympathetic but not knowledgeable about CFS, they have provided letters etc. when requested and the first filled out the forms for Centrelink, I don’t consider them to have/be treating me for CFS, I see them for other medical issues thought I may mention if these may be affecting my CFS or if I have concerns about medication they may be prescribing interacting or affecting me because of my condition. Having to educate the GP and explain things can make this more stressful even with GPs who are sympathetic

Focus Group 1, Male with ME CFS

I’ve had a number of GPs, and my GPs were of no use in diagnosis, but they were good in getting me to resources

Focus Group 3, Carer of a person living with ME/CFS

Well, it was the GP initially who kept telling my daughter that she had depression. She eventually changed GPs and also found a – we found a doctor who specialised in CFS/ME

Focus Group 2, Male with ME/CFS

So, it took me 18 months. I first got the ‘flu in—well, a particularly bad flu… I was like Male 1 and Female 1, peak of my fitness and working in a corporate environment and for the next 13 months—well, about 15 months, it was a living hell because I couldn’t figure out what was wrong, I’d go to GPs, no one could tell me, told me it was stress so I tried cutting back on stressful things…”

Focus Group 2, Male with ME/CFS

“…they finally said, “It sounds like chronic fatigue syndrome.” This was a year after I’d been sick and I’d gone to just those day clinic GPs and they didn’t have a constant GP and that wasn’t working out for obvious reasons because they didn’t have the time or the inclination to listen to the map that I was trying to draw out for them of this constellation of symptoms. I finally went to—it was wife at the time’s GP. So, my first appointment with her, she referred me to the specialist”