Data are presented verbatim and the GP identifier is displayed in brackets. Data are organised into five themes: defining CFS/ME, excluding the physical, potential harm from the label, the role of referral and moving on from making the diagnosis.
Defining CFS/ME
GPs described a struggle, trying to make sense of a difficult set of symptoms and attributed different causes to the illness:
'It's an illness they've got from life, whatever that is, and would be completely different for different people. So I wouldn't like to attribute it to one particular thing, but often it's to do with too much emotional stress going on in their life.' (GP17)
'I thought it was very much a sort of somatic presentation of a mental health problem and that was pretty much it. Probably quite patronising...sort of acknowledge that there was the fatigue, but didn't really see it as a separate entity. And I thought it was people sort of passively giving into symptoms and just sort of saying "right that's it", giving up. So I think it can be quite frustrating to work with.' (GP9)
In addition, there was some debate over whether CFS/ME actually existed as a medical condition:
'Well it's a relatively recent diagnostic term and I'm not so sure yet that it's recognised throughout the medical profession as an illness.' (GP0)
'I think that's increasingly wrongly medicalising it....to reinforce the fact that it's a medical disease that a specialist can cure, I think, gives the wrong messages.' (GP16)
Such beliefs about CFS/ME necessarily will lead to difficulties in labelling the symptoms or making the diagnosis of CFS/ME.
Excluding the physical
GPs articulated a process of diagnosis that prioritised excluding a physical cause for a patient's symptoms and presentation:
'Well I'm a doctor, so I'd take a very full medical history, I would examine them and look for relevant things, and I'd do some investigations which would include looking for anaemia, thyroid problems, liver problems, vitamin D deficiency, that kind of thing' (GP18)
GPs described looking for physical causes for symptoms and rarely suggested that exploring psycho-social issues would be important. Some GPs suggested that this bio-medical focus could be therapeutic since investigating symptoms communicates to the patient that the GP is interested in their symptoms and taking them seriously:
'In the sense that if I sent, for example, the patient for a full blood count and ESR, the patient will feel two things, one is that he will feel that I have taken him seriously, if that comes back as negative, then they feel that "yes, the doctor has something to back up, to say I haven't got any cancer or anything", so they are doubly reassured. So I know it's a £10 investigation, but it is therapeutic in that respect...and they feel at least you have taken them seriously, and they go away reassured, that in itself is therapeutic, because the word therapy means to be cured doesn't it?' (GP13)
Other GPs suggested that taking this bio-medical approach was important since they were excluding treatable causes of the patient's symptoms:
'Clearly I'm excluding the treatable' (GP14)
This implies that some GPs may feel that CFS/ME is not treatable, making their role in managing people whose symptoms are not easily categorized challenging.
Potential harm from the label
Some GPs believed that the label of CFS/ME can be helpful for the patient in giving a name to their symptoms:
'Some people like a label, some people like to know what's causing their symptoms whether it's the truth or not and some people are looking for a label to attach to their symptoms.' (GP17)
However, this value was generally considered to be limited and short-lived:
'At a superficial level it's empowering because it gives them control over their life and their work, but at a deeper level it prevents them from engaging fully with the existential conditions of their life which is what they can't cope with.' (GP18)
Furthermore, the majority of GPs felt that the label of CFS/ME could be harmful because it did not offer a clear management pathway for either the GP or the patient:
'I try to avoid it because once you give them the label you're actually setting them off on a track which will get them nowhere.' (GP14)
'Once you start labelling a patient if you're not careful you might have a self-fulfilling prophecy.' (GP15)
Role of referral
Those GPs who felt that making the diagnosis, or labelling the patient's condition, was helpful suggested that referring the patient to secondary care could potentially assist in achieving a diagnosis and providing support to GPs who lack confidence in making the diagnosis alone:
'If someone else saw them who I felt was a good physician and also came to the same diagnosis as me then I would feel more confident that we were right.' (GP15)
'I'd be referring to them to actually make the diagnosis because I think they do extra testing. I think there may be other things in blood tests that they can search for that we don't.' (GP22)
GPs, however, reported experiences of limited availability of potentially helpful places to support them in either making the diagnosis or managing the patient:
'Well, I don't think there is anyone to refer to. The specialist clinic is a waste of time; they just hold their hands up, "what can we do? Why, what are they sending this to us for?"' (GP14)
Moving on from making the diagnosis
GPs alluded to the difficulties they had experienced working with patients with CFS/ME once the diagnosis was agreed:
'I think you have to be very patient, accept yourself that you're not going to cure them but there are many things that you can do to alleviate the symptoms. Accept that it fluctuates, it's not something that comes on rapidly and then gradually gets better, it goes up and down. So you have to be prepared for a patient to appear to become worse despite your best efforts.' (GP20)
The role of supporting the patient was stressed by respondents:
'I think one of the crucial things for these kinds of people is for a doctor to say "I'm on your side, I'm going to be with you through thick and thin", and for the doctor to accept their relative powerlessness, but none the less to accompany the patient through this.' (GP17)
A number of GPs reported frustrations with this work, implying that CFS/ME was difficult to manage as no "cure" was possible:
'I mean, it's quite difficult for the Dr...So I think we have to learn, and you can walk alongside people with something you can't cure.' (GP12)
And that the work invested in working with such patients is largely unrecognised:
'That's terribly hard work for the doctor, it's very hard work. And there's no rewards in it...I don't refer the patient to twelve clinics so I've saved the health service millions of pounds and nobody gives a toss. Nobody says "thank you very much doctor, you're doing really hard work, you're seeing her every month and keeping her through a very difficult time, and you're going to do that year in year out for fifteen years." That kind of highly skilled work is completely disregarded and undervalued in the health service.' (GP17)
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