The results presented here focus on the key issues for the development of practitioner resources and training around the diagnosis and management of CFS/ME. Five themes were identified: 1. the need to ensure that the patient feels believed; 2. the importance of a positively framed diagnosis; 3. defining, prioritising and managing symptoms; 4. getting the most out of a consultation and 5. the role of carers. Illustrative quotes are provided and the unique identifier is provided in parentheses. For each theme, the implications for resource development were also examined in the corresponding data.
The need to be believed
Patients and carers described their frustration when GPs or practice nurses did not recognise the seriousness of their symptoms or questioned the legitimacy of the condition:
“he was really, really horrible, and he just said…he doesn't not acknowledge that people get ME, but he sat there and he said, 'I think we all get ME at some point in our lives. . So I changed doctors because I thought how can you be treated (like that)?” Patient 1 (female, severe CFS/ME).
Patients reported feeling that there had been an element of luck in achieving a diagnosis of CFS/ME and reported receiving recommendations from other patients of sympathetic health professionals who saw their symptoms as representing a legitimate illness:
“The manager (at the acupuncture clinic)… she was a very lovely lady, and she goes, do one thing, go to Doctor [names GP]… So we went to that surgery. It is quite far off… (But) even now there are GPs in that same surgery who says so you think that Doctor [names GP] is going to get you better? They don’t believe in it.” Patient 3 (male, severe CFS/ME).
When each test came back as negative, patients described feeling that their condition was invisible, and they were at fault for ‘imagining’ or ‘causing’ their symptoms:
“GPs are the gatekeepers to the specialist services, and if they’re actually saying there’s nothing wrong with her that a good night’s sleep won’t cure, then what can you do. So she started to feel that maybe it was in her head and she felt really depressed about it all… he says he doesn’t know so there’s no point in going back.” Carer 1 (female, daughter with severe CFS/ME).
Patients who felt believed by their GP described how important this was to their wellbeing. A diagnosis allowed them to tell family, friends and their employer that they had a label for their symptoms:
“when it was diagnosed formally, that was actually a big relief for me, because at least I knew that finally I could tell people what I had. Because previously, when I talked to people, I’d tell them I was ill and they said, “What have you got?” I said, “I don’t know”. And so this was a big…I think, it was a big pressure off my mind, because I’d been having all these symptoms, I didn’t know what it was, nobody understood what they were.. eventually when she formally diagnosed (me), that was a big, big step forward.” Patient 14 (male, mild CFS/ME).
The GP and practice nurse respondents expressed varying degrees of understanding of CFS/ME and some questioned whether CFS/ME was a legitimate illness. These health professionals were unaware of the evidence base for this condition or believed that the symptoms of CFS/ME could be explained by a psychological problem or secondary gain:
“I don’t use the term ME because I think it’s completely without evidence… I’d want to check that they’re not depressed or anxious or in a state of secondary gain.” GP 1.
“there’s still a bit of controversy around as to whether it actually exists… I guess there’s a part of me that thinks is it something that could be used by patients that want an excuse not to work… as the nurse you’d feel there’s nothing really I can do” PN1.
Those GPs and practice nurses who did recognise CFS/ME as a legitimate illness were aware that some of their colleagues fail to identify this condition which can lead to an inappropriate diagnosis:
“the problem I think lies in the fact that not all GPs are willing to accept or are aware of its existence, and they don't like people dropping in with tiredness all the time, time and time again. And so they get put on antidepressants, sleeping pills, blah-blah-blah, and you can manage your own thing.” GP 6.
Implications for resource development
Across patient and health professional interviews there was acknowledgement of the value of GPs recognising CFS/ME as a legitimate condition and to have a sound understanding of the condition. This highlights a need for training to challenge the unsympathetic attitudes held by some practitioners. However, some GPs and practice nurses were hesitant to prioritise time for face-to-face training due to the low priority given to CFS/ME:
“I don’t think it’s seen as a major illness that’s worth money and QOF points…people will do stuff if they think there’s a financial incentive in it… So no, I don’t think they would prioritise it and I don’t think it would be something that they’d (other GPs in practice) want to have a meeting about.” GP 7.
However, health professionals suggested that they might engage in training if they thought that it would help them to reduce the number of consultations with patients who repeatedly present with symptoms of CFS/ME. Practitioners described the need for easily accessible IT based training. An e-learning module was therefore believed to be the optimal approach.
Framing the diagnosis positively
All patients highlighted the need for the diagnosis to be given by the GP in a positive way to maintain hope that symptoms can improve:
“That was like… it’s like the sun coming out basically. It was so wonderful that she could see a consultant and physio and counsellor, everybody really that she needed to see.” Carer 1 (female, daughter with severe CFS/ME).
Patients described having been given a diagnosis of CFS/ME without any advice on symptom management or support:
“it wasn’t positive, he said basically there’s nothing else. I’ll diagnose it as chronic fatigue, but I don’t really want to label you as a person with ME. I said, well, for me, I need some diagnosis for work, I said, because I cannot carry on being off and he said, well my diagnosis will be the chronic fatigue if you want it… I felt like I’ve been given a life sentence. There was no, “Well you could get better” or anything like that, it was terrifying… (Patients need) more about the condition, that people can recover from it rather than finding it depressing that that is it, you’ve got it, and you’re always going to have it. I’m sick of getting told that.” Patient 5 (female, mild/moderate CFS/ME).
Practitioners described how the diagnosis of CFS/ME was made by exclusion, due to the lack of positive diagnostic criteria. Some GPs and practice nurses used the label as a last resort and with some reluctance due to their own lack of knowledge, but also because making the diagnosis did not lead to obvious treatment approaches:
“I think I would struggle to diagnose… [it would be better] if I had more awareness of what the diagnostic criteria were for chronic fatigue syndrome but in my experience it’s what people tend to get labelled with if anything else can’t be found… I certainly wouldn’t feel confident, I wouldn’t feel that I’d know enough to treat chronic fatigue syndrome myself” PN1.
Some GPs and practice nurses stated that they avoided the diagnosis as they believed that there was no cure for CFS/ME or that the label may be harmful and act to exacerbate the symptoms:
“I don’t really feel I know enough about it to tell them an awful lot because I’m not convinced it’s that positive, the things that we can do for them really is it? I’m not convinced it’s a diagnosis that you can be making that is massively going to help somebody.” GP 7.
However, CFS/ME specialists and other GPs did recognise the importance of a positively framed diagnosis, and the impact this can have on the patient’s quality of life:
“Actually making a diagnosis can be quite empowering for patients as long as all of the causes have been excluded, that all red flags have been excluded, et cetera, and that the clinical history sort of makes sense, the story, listening to the patient’s story, when you’ve heard it many times it seems fairly obvious but you actually need to make time to hear it.” CFS/ME specialist 2.
Implications for resource development
It was evident from across the groups that a positively framed diagnosis is valued and has implications for management. The practitioner needs to discuss the possibility of CFS/ME in a positive manner, providing patients both with an explanation for their fatigue and with options for symptom management. The use of a template built into the GP computer system was suggested as being potentially useful to aid practitioners to conduct a symptom check-list and carry out the necessary investigations and view management options.
The data highlight the need for a tool for use in primary care to aid a positive diagnosis. CFS/ME specialists currently use an activity diary to record a patient’s level of fatigue and the impact of everyday tasks on symptoms. This diary could be used to facilitate coming to a positive diagnosis and highlight the severity of the patient’s symptoms allowing the patient to demonstrate to the GP how fatigue varies, particularly how fatigue can be prolonged and recovery slow.
This suggests that the e-learning resource for GPs needs to include a computer template to assist the diagnostic process, guidance on how to use an activity diary to aid a positive diagnosis and perhaps a video-recording of a consultation in which the diagnosis is being framed to the patient in a positive manner.
Defining, prioritising and managing symptoms
CFS/ME is a complex condition and patients described a variety of symptoms and co-morbidities. Patients commented on how it can be difficult to describe the extent and impact of their symptoms to their GP. They described visiting their GP on ‘a good day’, when they had the energy to leave the house:
“I think one thing between me and my GP is complete lack of awareness of how I am when I'm really ill… if I can't see him I'll cancel appointments, cancel appointments until I'm fit enough to go in, to walk in and sit there and see him. So he only ever sees me when I'm capable of being like that. So I sit there like this and I'll go, 'I've got ME.' But it's not my typical bad day or day of ME, and (when) it's like this it will exhaust me talking to you” Patient 1 (female, severe CFS/ME).
When asked about symptom management, patients described how they had been left to find their own information and persuade the GP to meet their needs. This could be a confusing process as the internet could present contradictory, and sometimes unhelpful, messages on the treatment of CFS/ME:
“so she knew she had ME… and then had to go and do your research and decide for yourself which treatments (were suitable)… it's just a shame that there isn't more (help) within…you know, within the system.” Carer 9 (male, wife with moderate CFS/ME).
Patients and carers explained how they then took this information to their GP in an attempt to raise their awareness of the condition:
“(The GP) did admit that he didn't know much about it because when I told him about the chronic fatigue service and various other things, he asked me for the information and he said would I bring it in so that he could pass it on to…for other patients as well. So he was quite open to knowing more about it really.” Patient 12 (female, mild/moderate CFS/ME).
Some patients also sought help from private professionals or paid for alternative therapies as they did not feel that they received any support from the NHS. This often led to financial costs:
“we started spending money blindly and I would do anything to get him better, so it’s like my priority was not…we don’t have holidays basically but want to get better so that life goes on. So we went to another private doctor. He used to do acupuncture,acupressure… Homeopathic. So it was like all that sort of thing. And we spent a lot of money there. Nothing is happening. Nothing is improving… By that time we spent about £20,000.” Carer 5 (female, husband with severe CFS/ME).
This gap in knowledge was also recognised by CFS/ME specialists who highlighted a training need in primary care:
“GPs and practice nurses want to do the best for their patients but often they don’t know what to do… we bandy around things like (sleep) hygiene and pacing and lifestyle management but do we actually know what we’re talking about, exactly what the narrative is in the consultation” CFS/ME specialist 2.
However, some GPs did describe attempts to engage in symptom management with their patients. This included providing advice on pacing and graded exercise, and referring patients to services for interventions such as cognitive behavioural therapy (CBT). Although the need for a specialist services is recognised, health professionals agree that GPs can successfully recommend ways to manage many symptoms associated with CFS/ME:
“cognitive therapies work, antidepressants work for some people, pacing undoubtedly works, changing people’s ideas about what they can do work, attending to their social and psychological situation helps.” GP 1.
Patients and carers also highlighted the need for sign posting from their GP. Information on local support groups, advice on benefits and referrals to the third sector. However, most GPs and practice nurses did not have details of relevant contacts:
“I don't know of any local support groups or anything. And I think it would be important for people to get in touch with other people that have had similar experiences, because I think that would help… I think I need advice where we should be referring to.” PN4.
Health professionals described difficulties with referral to secondary care due to fragmented services and a lack of collaboration and a number of GPs and practice nurses were unaware of specialist CFS/ME services. Others had referred their patients to the specialist service, but lacked an understanding of what these services can offer patients. There was concern around the long waiting time for patients to attend the specialist service and it was suggested that improved communication between primary care and the specialist service may enable the GP to manage the patient during this period:
“it’s been difficult to access the right services and support groups because they aren’t obvious. I mean I’ve never had a talk on ME and I go to every educational thing going. It wasn’t covered in the general practice nurse course that I did.” PN2.
Implications for resource development
There is a need for GPs and practice nurses to develop an understanding of symptom management and appropriate sign posting for CFS/ME. GPs and practice nurses wanted to be able to print information on symptom management from an on-line resource during the consultation:
“I think if it’s a brief one page (leaflet), you’re more likely to actually read it and possibly remember it and refer back to it. I think especially with CFS, I guess the concentration and you know energy required to sort of look at information and digest it, it would need to be brief snippets rather than lengthy tomes.” PN1.
GPs also suggested that a DVD would be useful for those patients who would struggle to read written resources because of fatigue and concentration and memory problems:
“I think a DVD would be useful for patients very much because they can take away something to actually look at.” GP 6.
The patients and carers stated that a brief leaflet outlining the symptoms and the evidence for management options would be useful at diagnosis. They then suggested that the resources should give them the opportunity to go back to their GP to discuss each problem in more detail. For patients who might find it too difficult to read leaflets, a DVD, which could be watched with their family or carer would be preferred. As well as explaining symptom management, patients said that they would like an overview of the evidence base on the DVD and case studies of patients and carers to gain an understanding of how others live with the condition:
“If you could get like a booklet or something (which includes) support, what things work, what things don’t work, and I think that would have been very, very, very helpful, definitely…” Patient 14 (male, mild CFS/ME).
Getting the most out of a consultation
Patients and carers described how visiting the GP can be a challenging experience. Patients described difficulty in remembering or articulating their symptoms and how they would take a carer or family member with them to help make the most of their consultation, and that a double appointment was sometimes needed. Some patients also highlighted a need for flexibility when making appointments:
“(She) can suffer memory loss so I thought I always needed to be there just to prompt her in the background if there was anything she needed more to say… And emotionally, you know, she obviously felt quite emotional about it, particularly in the early days… Each visit is quite brief to the GP so (she) had to know in her own mind what she wants to say so… you've got to think of the right sort of questions really” Carer 9 (male, wife with moderate CFS/ME).
Health professionals also recognised that a 10
minute consultation with a patient with CFS/ME can be a challenge due to the variety and complexity of symptoms:
“your heart sinks when they come in the room really when you see… and they’ve got depression down as well because someone has given them anti-depressants and thought they were depressed with the symptoms before, and they’ve also got lots of other medical problems usually.” GP 7.
A ten minute consultation was also seen as a potential barrier to diagnosis by CFS/ME specialists as GPs may not be able to gain a complete understanding of the variety of symptoms patients can experience, and impact of these symptoms on their life:
“I think one of the problems is that GPs have such a short amount of time to see patients… people often just take their main problem, their one problem, and I think sometimes the whole picture can be missed if you’re not seeing somebody on a regular basis.” CFS/ME specialist 2.
Implications for resource development
Patients need GPs and practice nurses to be aware of how the symptoms of CFS/ME can impact on their ability to articulate and remember information in a consultation. Patients may need extended appointments, flexibility, phone appointments, email correspondence with the GP, and an occasional home visit. In order to support the patient to get the most out of their consultation, guidance on how to prioritise their symptoms need to be provided in the patient resources.
The role of carers
Patients and carers described the important role that carers play in the management of the illness. This included support in the home and during a GP consultation:
“I do ask [my mum] for things and she'll come and she'll help me with the children, and she'll either take them out or have them stay at hers or something, so she helps me with the children a lot… I've already had complaints from my dad about my mum's always here and helping and things.” Patient 1 (female, severe CFS/ME).
When taking on a caring role, carers explained how they could feel isolated as they had to devote so much time to the patient in order to attend to their needs. The financial pressure of the patient losing their job or paying for alternative therapies was also cited as a stressor:
“And how are we going to manage? For god sake, we all need money. I mean am I going to get electricity free, gas free, what? And because [my husband] feels cold all the time, nearly £2,000 we spend on utilities, on gas and electricity, a year. That’s quite an expense because we have to keep the house warm.” Carer 5 (female, husband with severe CFS/ME).
Despite the valuable role that carers can take in supporting a patient, some carers lacked understanding of CFS/ME and were frustrated by the patient’s symptoms, which in turn put pressure on the relationship. They also discussed the danger of giving inappropriate advice or support to patients, exacerbating symptoms by becoming over solicitous or pushing the patient to do too much too soon:
“I had no idea what she was going through because you don’t understand you know you come home and she’s in bed. [I used to say] ‘Come on get out of bed do something, you might feel better’… I had no idea. I pushed her, she got worse” Carer 6 (male, wife with moderate/severe CFS/ME).
GPs and practice nurses stated that although their practice has a ‘carers register’, they did not recognise and register carers of people with CFS/ME:
“It’s very difficult in a GP setting to chase the carers, it’s very difficult, and then if you chase them on their own confidentiality kicks in as well… There’s no formal assessment on carers’ needs in the truer sense, no, there’s no formal sense.” GP 9.
Implications for resource development
GPs need to recognise the role of carers in supporting people with CFS/ME. The impact of this supporting role on the carer themselves should also be considered. Carers need information on CFS/ME and support groups to encourage a stable relationship between the carer and patient and to facilitate appropriate support.
A practitioner e-learning module should raise awareness of the needs of carers and provide practical advice on how to both support the carer and involve them in the management of the patient. A patient and carer DVD will provide carers with information on how to support both the patient and themselves.