BMJ  2005;330:648-650 (19 March), doi:10.1136/bmj.330.7492.648

Clinical review

A patient's journey with myalgic encephalomyelitis

¹ Health Services Research, Primary Care Sciences Research Centre, Keele University, Keele ST5 5BG, ² Light Oaks, Stoke on Trent ST2 7DE, ³ Community Medical Education, Keele Medical School, Keele ST5 5BG

Introduction

Myalgic encephalomyelitis (ME) presents patients and their general practitioners with the challenge of managing a life shaped by chronic debilitating illness, pain, and uncertainty. The notion that body limitations resulting from illness must be recognised is shown in the literature on chronic illness, but at the same time it is necessary to understand the social context of change and diversity within which illness is conceptualised. People give meaning to their illness and altered life course with reference to socioeconomic relations, cultural perceptions and beliefs, and their interactions with health and social care services.

Myalgic encephalomyelitis represents the conundrum of uncertainty in the diagnosis, treatment, and prognosis of the disease. Many of the symptoms that people present with could be indications for other diseases, making it difficult to diagnose. Moreover, there is still some debate about the existence of the disease as a clinical category. Current guidance focuses on the symptoms of fatigue and malaise, cognitive impairment, and pain. The patient's account in this paper was collected as part of a research study on osteoarthritis of the knee. The patient, Daphne Evans, was interviewed by BNO, but the discussion centred on myalgic encephalomyelitis because she considered this condition of primary importance. Her doctor's account was added to her own account when the paper was drafted.

Diagnosing uncertain disease

Daphne's story illustrates the syndrome of myalgic encephalomyelitis as a chronic and fluctuating illness with a profusion of symptoms that affect many parts of the body, which can result in severe muscle pain, physical and mental fatigue, problems with concentration and memory, and feeling unwell (box 1). Although health professionals increasingly take the patient's "life world" into account, indeterminate diseases highlight the tension between the biophysical and psychosocial aspects of illness.

Box 1: Daphne's journey to diagnosis I was originally ill in 1979 and told I was very ill but nobody could diagnose it. I had all sorts of tests; I was told I'd had a massive viral invasion but they couldn't define it... Then I crawled back to "health," but never got back on par. I could tell that because of what my hobbies were—they were very active ones. And then I, sort of, did hit and miss with states of health for five years... until I had a very minor accident in the home and hit my head and had very bad concussion, but from that point on, my body just seemed to react, so all the other symptoms that had been fairly shallow; fairly come-day-go-day, suddenly exacerbated and I was at one point taken into hospital. They did all sorts of tests: pituitary gland failure, diabetes, cardiac troubles, brain tumour... and all the path labs could come up with was that the tests weren't normal but they weren't abnormal enough to diagnose a specific thing. So, obviously my body wasn't working properly. The lowest point was when I had about six months in bed. I vaguely remember it... where I know I couldn't move; I couldn't swallow half the time; I was just totally, utterly weak. Finally, in March 1988 a diagnosis of ME was made between the GP and endocrinologist based on a positive antibody test for enterovirus and the pattern of symptoms. Subsequently I slowly improved to go back, on and off, to work for the next two years during which time I then educated myself—by joining the ME association and reading up on it from research papers and engaging my GP (Andrew). I've learnt a lot about ME, and Andrew has taught me about managing chronic illness—and I've taught him all I know about the disease.

Daphne's account illustrates the long road to arriving at a diagnosis, which was helped by her own research and the engagement of two doctors with an interest in the disease.

The struggle to be believed by health professionals during this time generated strong feelings in Daphne:

I knew what I was like before this illness struck, in other words, not a person with depression. I was frustrated that what was subsequently diagnosed as ME, was by some professionals being labelled psychological, when so many parts of my body were malfunctioning. I was angry and frightened at symptoms being dismissed, like people saying "pull yourself together" and "there is nothing the matter with you." Once I was given the diagnosis of ME, this was a tremendous relief, although at the time I did not know what it meant.

Her current doctor, Andrew, needed to come to terms with the nature of myalgic encephalomyelitis as an indeterminate disease but acknowledged Daphne's experience of illness (box 2).

Travelling alone

Being chronically ill and in pain can be an isolating experience, both in terms of containing the impact of illness from the outside world and in being able to participate in social life.

Daphne's account shows the tension between maintaining her independence (keeping the illness invisible) and managing her pain and fatigue (living with the consequences of self care):

There is much I once did and know I cannot even contemplate doing now...No, I don't avoid doing certain things, and this is my down coming. Because I live on my own, if I avoid doing certain things, how can I exist? For example, I have to move that chair to open that drawer to get my videos out. Now that on a bad day will have really bad consequences: pain, fatigue, poor sleep will exacerbate. So do I say, "I will wait for somebody to move the chair" or do I say, "I'll **** well move the chair!" So, I just move the chair.

Myalgic encephalomyelitis has a devastating effect on people's ability to operate as a social being, and Daphne describes many social occasions that she has missed because she has been too ill or in too much pain. She considers herself a gregarious person, who "comes alive with people" and therefore sees the disease as a test of her own resilience. When talking to Andrew about this, she recounts the following dialogue:

Once, I was having a really bad time with ME, I remember Andrew saying "Daphne, this illness is crucifying you because of your personality; your character. You are so gregarious, so giving, so outgoing and at this moment in time you are imprisoned," and he just sat and looked at me with such compassion and empathy—I could have hugged him.

Looking back, Daphne believes that this was a defining moment in the doctor-patient relationship, and she realised that he really understood about her disease and about her. The importance of the doctor's understanding of the patient's character cannot be underestimated when dealing with chronic illness, and as Daphne attests, her isolation is alleviated with the recognition of how she suffers from the social consequences of illness. Andrew responded:

With Daphne's help I began to learn more about ME. Magazines arrived regularly at the practice, Daphne having highlighted the important bit for me to read so she saved me time. This material was invaluable in equalising the doctor-patient relationship, i.e. in educating me! There was a tension: I spent more time researching this condition than others. I realised Ineeded to be honest about this as I couldn't read everything in what I perceived as Daphne's timescale. On checking this with Daphne she had no timescale. This has been a big learning point: when I have honestly raised my feelings and thoughts (as Daphne does with me), I have found that much about ME; Daphne's predicament and needs are perceptions on my part and not truths for her (similar to other sufferers of chronic illness). I believe this process of checking perceptions has helped our mutual understanding, and I hope strengthened the therapeutic component of the relationship.

Box 2: Andrew's story Daphne arrived at the practice with the diagnosis of ME. I didn't know a lot about ME. At the time there was much debate about whether ME truly existed as a disease entity, and if it did what its aetiology was. Daphne asked, "Do you believe in ME?" A certain discomfiture followed: Did I believe in it? What is a disease? Did the label matter? What impact would a "yes" or "no" have on Daphne? Why had she asked me? The truth was I didn't know whether ME fulfilled the scientific criteria of a disease, though I didn't think it mattered. What mattered was that this person felt real pain, physically and psychologically, had her life turned upside down, and was suffering. The uncertainty of a disease category was not important. GPs live with uncertainty. "Yes, I believe in your illness and I would like to find out more about ME" is what I think I said (or hope I said).

Further reading Barry C, Stevenson S, Britten N, Bradley C. Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor-patient communication in general practice. Soc Sci Med 2001;53: 487-505. Bendelow G, Williams S. Transcending the dualisms: towards a sociology of pain. Sociol Health Illness 1995;17: 139-65. Comaroff J, Maguire P. Ambiguity and the search for meaning: childhood leukemia in the modern clinical context. Soc Sci Med 1981;15B: 115-23. Hutchinson A. (Chairman). A report of the CFS/ME Working Group. Report to the Chief Medical Officer of an independent working group. Jan 2002. Hydén L-C, Peolssen M. Pain gestures: the orchestration of speech and body gestures. Health 2002;6: 325-45.[Abstract/Free Full Text] Kleinman, A, Brodwin PE, Good BJ, Delvecchio Good, M-J. Pain as human experience: an introduction. Pain as human experience: an anthropological perspective. In: Delvecchio Good M-J, et al, eds. Berkley, CA: University of California Press, 2001: 1-28. May C, Allison G, Chapple A, Chew-Graham C, Dixon C, Gask L et al. Framing the doctor-patient relationship in chronic illness: a comparative study of general practitioners' accounts. Sociol Health Illness 2004;26: 135-58.[CrossRef] Polanyi M, Prosch H. Meaning. Chicago: University of Chicago Press, 1997. Risdon A, Eccleston C, Crombez G, McCracken L. How can we learn to live with pain? A Q-methodological analysis of the diverse understandings of acceptance of chronic pain. Soc Sci Med 2003;56: 375-86. Smith M. Talking about pain. Perspectives on pain: mapping the territory. In Carter B, ed. New York: Arnold, 1998: 26-45. Werner A, Widding Isaksen L, Malterud K. "I am not the kind of woman who complains of everything:" illness stories on self and shame in women with chronic pain. Soc Sci Med 2004;59: 1035-45. Williams S. Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociol Health Illness 2000;22: 40-67.[CrossRef]

Ways of coping

Patients accept pain and illness in a variety of ways, and a central feature of adaptation is the goal of reducing the potential of chronic illness to overpower life. Hence, Daphne's insistence on emphasising who she really is:

I think it's harder now for me, because at the back of my mind, all the time, is the limitation that this illness puts on me. I have lost a lot of who I really am. It doesn't take much... it's there, under the surface, all the time. I have not dealt with it completely, but then, perhaps no one ever can because that's denying what is, for you, your "real" you. I'd have to change character and personality to cope with that, I think.

Although she reiterates at various points in the interview that she sees herself as a positive person, Daphne also wants her frustration with the limitations that the disease poses on her to be recognised as legitimate. Thus, she attempts to be clear about how she copes with the disease:

So I have always tried to be open about this... is my emotional life affecting my health... because if so, then it stands to reason, I should try to do something about it? Any subsequent appointment with Andrew about a physical problem would then always include my feelings. I would say: "I'm really fed up." But also find myself asking: "Isn't there anything else we can try?" Even if there wasn't I would always go away feeling better in myself, because someone had listened to my story.

Sharing perspectives

Daphne's and Andrew's accounts highlight that negotiating a shared narrative is a key part of creating a long term and effective therapeutic relationship. The challenges that the disease posed for both of them were considerable: Daphne had to come to terms with the all encompassing impact of the disease on her own being, and convey the complex interaction of symptoms and physical and psychological adjustment to Andrew. Given the struggles Daphne had had with previous clinicians, she needed to ascertain Andrew's approach to the disease right at the start of their relationship. This required courage on her part.

In turn, Andrew was faced with a patient who put him on the line straightaway by asking about his knowledge and belief in patient based accounts of illness. He responded by being honest about his own limitations, both in terms of knowing about the disease and in the amount of time he could devote to gaining more expertise. Daphne and Andrew developed a shared approach when Daphne's own experience became central to the therapeutic relationship, so that they could learn together how to deal with indeterminacy and focus on the impact of the disease on the individual patient. At the same time Andrew gained much from this process, which shaped his treatment of other patients with myalgic encephalomyelitis.

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Contributors: All authors contributed equally to the writing of this paper through shared discussion and interpretation of the data. BNO is guarantor.

Funding: New blood fellowship (former West Midlands regional health authority). The researchers are independent from the funding body.

Competing interests: None declared.

Ethical approval: North Staffordshire local research ethics committee for the KNEST study interviews (project 02/79).

(Accepted 26 January 2005)

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