Table 2 Main themes, subthemes and illustrative quotes from interviews with health care practitioners (HCPs)

Diagnosis

The process of diagnosis

"I think there's still some doubt you know amongst quite a lot of professionals as to what, what the condition is ... in fact I think whether it exists at all" (HCP3)

Professional experience and expert practice

"... the more people you come across the more you pick up these little differences all round the edges ... because they kind of sound very significant actually there's variability and the differences 'cause often there's a set range of symptoms that we use to diagnose..." (HCP2)

No diagnosis, delayed diagnosis, or misdiagnosis

"I think most people by the time they've got to us they've been round the houses so many times or they've seen other consultants or they've been to the GP backwards and forwards" (HCP1)

Confirming the diagnosis

"I think there's always some I suppose that we would say are sort of idiopathic chronic ... they perhaps appear to have all the kind of signs and symptoms but maybe they still don't they don't quite fit the criteria..." (HCP1)

Professional perspectives on the impact of living with CFS/ME

Accepting the diagnosis

"I think they find it difficult to accept that they've got anything wrong with them and if they have got something wrong with them that anybody else will believe that there's anything wrong with them" (HCP3)

The impact on life and living

"there's lots of activity that they don't even acknowledge they're doing just because it's such basic day to day stuff ... they'll only think about the big things but um it isn't just the big things" (HCP2)

Families & family burden

"carers find it quite difficult to know how to help and they might give very mixed messages sometimes 'cause they don't know whether they should be telling them to get off their bottom and get on with it or whether they should be telling them to rest" (HCP2)

Financial burden

"people get incredibly stressed about their benefits" (HCP2)

"some people obviously financially have to work even if maybe it's not the best thing for their health" (HCP1)

Treatment and management

Initial stages

"I think those people who come in with the kind of mind of 'you're going to kind of give me information and advice and I'm going to go away and put it in place' those people do really well. I think those people who come in and want you to do something to them and make it better I think inevitably those people are disappointed because we can't do that" (HCP1)

Complexity and severity of the condition

"... everybody's different and you know people haven't always got one thing...um they might have other problems as well, so then it starts to get even more complicated because they're supposed to be doing one thing for one medical condition but the fact that they've got their ME means they're struggling to do what they should be doing for the other one..." (HCP2)''

Progress and change

"she slowly moved forwards with initially hardly being able to do anything at all to now she's going out on a daily basis, now this is an illness that is spread over seven years, eight years, and she is now improving, we also had another patient in there who, who improved completely and has gone back to work" (HCP6)

Alternative treatment approaches & the evidence base

"...we see people who've tried all sorts of different things and some of those things are useful ...or those people feel like they're useful but it it's very it's difficult for our point of view because there's no sort of evidence base for any of those things..." (HCP1)

"We have different types of treatments looking after them, like acupuncture, herbal remedy, tonics, and life style. I give them a guide line to say you should do that and try not do that and diet wise we give them suggestions, certain diet is good for this condition but something else are not too good" (HCP5)

Cognitive, psychological & counselling approaches

"some people ... perhaps maybe don't need that kind of formal input and maybe just access counselling or they use the kind of link worker service via their local GP surgery um again just as a sort of means of more support ... that works well for some people depending on what the issues are - some people don't need a kind of a whole formal sort of CBT process some people just need some simple counselling..." (HCP1)

"...if you push yourself and you get tired and you get symptoms then ... some people will tend to remain within the comfort zone, that's not the natural reaction, those are the people who actually do the best from CBT because it actually helps them to break that cycle..." (HCP6)

Professional values and support for people with CFS/ME and their families

The existence of CFS/ME as a condition

"I would say probably half of general practitioners don't understand it and regard it as a psychological manifestation, rather than a physical [one]" (HCP6)

"you sometimes get whole practices which decide ME doesn't exist" (HCP6) "we do have patients who see GPs who will quite happily say to them they don't believe that CFS exists" (HCP1)

Therapeutic relationships and client centeredness

"I think most people go into their GP with a symptom that's really worrying them at that point or something they really need help with but they probably don't tell them the whole because they've got five, ten minutes" (HCP1)

"with this particular condition they have to keep having help in different time periods - it means what I did for her she could have been better for six month and a little stress or something, symptoms came back so she's back" (HCP5)

Information available for people with CFS/ME and others

"... there is quite a lot of other stuff out there ... nowadays it's very easy for people to just type it into the internet and all sorts of stuff comes up ... that is very confusing for people - you know there's lots of people offering all kinds of magic wonderful answers and I think when you want to get better it's very easy to believe all those things so I suppose we're quite careful about where we direct people to..." (HCP1)

Supporting people with CFS/ME in the workplace

"..the kind of return to work programs that they are used to doing with people who have broken their leg its completely different in that you can't get someone back to work with a condition like this in six weeks and they are not going to go from no hours to full time in a short space of time". (HCP1)

Health professional roles and working practices

Enabling self-management

"I do advise them very basically and very basic things on the boom and bust here in terms of the charging the battery and not to spend it immediately, that they will have good days and bad days and, and again to actually have a constant energy expenditure on good and bad days" (HCP4)

"if you think how people normally deal with an illness if you get the flu you go to bed for a week don't you and then as it goes away you start to get up and you just get going and you do a bit more every day 'till you get back to normal and that's a normal response we all understand to illness, and so people think they can do the same thing with this but it doesn't work quite the same" (HCP2)

Specialist services & working partnerships

"...certainly sometimes people have to push to get referrals to a clinic like ours um or quite often we see people who've they've been on the internet and they've found us and given the GP the details and then the GPs made a referral" (HCP1)

"it's never going to just affect that one person in isolation they have to have that support set up around them so most people we see we would see with someone else like that's often and again because most people's maybe concentration isn't very good they often need someone else to remember all the information" (HCP1)

Diverse populations

"..yeah I think we very much have a kind of ninety ninety-five percent of our case load is a very kind of standard set of people and we really don't have very many people from kind of lower socio-economic groups or from ethnic minorities - a few but probably even the people we have from ethnic minorities probably still fall into that very kind of middle class group...we don't have many people who fall outside of that it's very unusual and [this is] a very ethnically diverse place" (HCP1)

"what I've seen over time is the middle class turning up in my clinic because they want an explanation" (HCP6)

Professional frustrations

"I feel a bit frustrated if people need help and probably society doesn't realise they are ill - I do have a patient with ME who said my GP said it's in your mind, I don't believe she has something in her mind, she's depressed and she's very tired she struggled to get up but probably even family members and friends don't understand, they think you are lazy" (HCP5)

"some people never get past that and so they're very stuck uh so it's quite difficult to get in there unless you've got that cooperation and the willingness to work together" (HCP2)