Obstructions for quality care: ME/CFS

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    Obstructions for quality care experienced by patients with chronic fatigue
    syndrome (CFS) - A case study

    Ann Marit Gilje(a), Atle Soderlund(a), Kirsti Malterud(b,*)
    a Department of Public Health and Primary Health Care, University of Bergen,
    Bergen, Norway
    b Research Unit for General Practice, Unifob Health, Kalfarveien 31, N-5018
    Bergen, Norway
    * Corresponding author. Tel.: +47 55 58 61 33; fax: +47 55 58 61 30.

    Received 13 September 2007; received in revised form 31 March 2008; accepted
    4 April 2008


    To explore obstructions for quality care from experiences by patients
    suffering from chronic fatigue syndrome (CFS).

    Qualitative case study with data drawn from a group meeting, written answers
    to a questionnaire and a follow-up meeting. Purposeful sample of 10 women and
    2 men of various ages, recruited from a local patient organization, assumed
    to have a special awareness for quality care.

    CFS patients said that lack of acknowledgement could be even worse than the
    symptoms. They wanted their doctors to ask questions, listen to them and take
    them seriously, instead of behaving degrading. Many participants felt that
    the doctors psychologized too much, or trivialized the symptoms. Participants
    described how doctors' lack of knowledge about the condition would lead to
    long-term uncertainty or maltreatment. Even with doctors who were supportive,
    it would usually take months and sometimes years until a medical conclusion
    would be reached, or other disorders were ruled out. Increased physical
    activity had been recommend, but most of the informants experienced that this
    made them worse.

    Current medical scepticism and ignorance regarding CFS shapes the context of
    medical care and the illness experiences of CFS patients, who may feel they
    neither get a proper assessment nor management.

    Practice implications
    CFS patients' reports about patronizing attitudes and ignorance among doctors
    call for development of evidence based strategies and empowerment of
    patients, acknowledging the patients' understanding of symptoms and the
    complex nature of the disease. The NICE guidelines emphasize the need of
    patient participation and shared decision-making.

    Keywords: Chronic fatigue syndrome; Patient preferences; Doctor-patient
    relation; Diagnosis; Therapy; Qualitative research; Case study; Quality of
    health care

    1. Introduction

    Chronic fatigue syndrome (CFS) is a disabling condition characterized by a
    profound, persistent fatigue, which is typically worsened by minimal physical
    or mental exertion [1,2]. Pain, cognitive impairment, sleep problems and
    other additional symptoms usually occur (Table 1). The etiology is still
    uncertain, but a variety of possible disease mechanisms including the immune
    system, adrenal/pituitary axis, and psychological stress, have been proposed
    [3]. The patients suffer from debilitating subjective symptoms, while
    consistent, objective findings are lacking. No single diagnostic test can
    confirm diagnosis, which is made on clinical grounds, requiring the presence
    of the specific fatigue with associated features and exclusion of alternative
    medical and psychiatric disorder [4]. No universal treatment has yet been
    identified, but cognitive behavioral therapy (CBT) has shown benefit in
    several studies [5]. Doctors and patient may hold opposing explanatory models
    about the nature of the condition [6,7].

    CFS is not the only condition where patients present with symptoms for which
    no physical pathology can be found. This kind of problems are often labelled
    as the medically unexplained disorders or physical symptoms (MUPS) [8,9].
    MUPS challenge the traditional biomedical framework, where a disease is
    supposed to have a structural origin, caused by an agent or event which can
    be traced by a diagnostic test, and treated by counteracting the cause. The
    biomedical conceptualization of disease fits some disorders, such as
    streptococcal pharyngitis or other infectious diseases, while more complex
    conditions with multicausal background or individualized treatment response
    are less adequately incorporated by this model.

    As a consequence, a broad range of chronic, disabling health problems cannot
    be adequately understood by means of the biomedical framework alone. Doctors
    and patients work hard with the subsequent uncertainty in different ways, and
    tensions emerge when they meet. General practitioners report skepticism
    towards CFS [10]. Doctors even say explicitely that they feel uneasy when the
    biomedical ideals do not fit with the clinical reality [11,12]. They struggle
    when their professional authority shall be managed under what is perceived as
    scientific uncertainty [7]. The consequence is not beneficial for the
    patient. Women with chronic pain presented accounts of being met with
    scepticism and lack of comprehension, feeling rejected, ignored, and being
    belittled, blamed for their condition [13]. Patients with CFS are often
    dissatisfied with the quality of medical care they receive [14]. They report
    experiences of stigmatization related to the unclear symptomatology of the
    disorder, especially before receiving a diagnosis [7,15].

    A functioning doctor-patient relationship is essential for quality care for
    patients with any chronic, disabling health problem, including the process of
    diagnosis, treatment, and support. Previous research has demonstrated some of
    the challenges which may appear in encounters between doctors and patients
    with CFS. After several encounters with distressed CFS patients in the last
    author's practice, we felt a need to learn more about the perspectives and
    needs for health care in this group of patients. We therefore conducted a
    study to explore obstructions for quality care from experiences by patients
    suffering from CFS.

    2. Methods

    2.1. Design, data, analysis

    This is a case study based on analysis of data from multiple sources - a group
    meeting, a questionnaire, and a follow-up meeting. The study was approved by
    the regional committee for medical research ethics (Health Region West,
    Norway) and The Norwegian Data Inspectorate. Participants in the group
    meeting were recruited from the local patient organization, which we
    considered as a purposive sample of people who might be especially aware of
    questions related to quality care. Ten women and two men aged 22­54 years
    (mean 41) attended the meeting. All had suffered from CFS for at least 1
    year, one of them the last 20 years. Their diagnoses had been confirmed by
    various doctors, and all the informants were on disability or rehabilitation
    pension. None of the participants belonged to the practice of the third

    We conducted a group interview during the meeting according to focus group
    principles [16]. The moderator (KM) invited the participants to share their
    experiences from encounters with health care providers, and to describe
    episodes from everyday life where the symptoms made a difference as compared
    to life before illness onset. Findings regarding the latter have previously
    been presented [17]. The conversation was audiotaped, transcribed, and
    supported by field notes. Qualitative analysis was conducted with systematic
    text condensation inspired by Giorgi [18,19]: (a) reading all the material to
    obtain an overall impression and bracketing previous preconceptions; (b)
    identifying units of meaning, representing different aspects of participants'
    experiences of health care and coding for these; (c) condensing the contents
    of each of the coded groups; and (d) summarizing the contents of each code
    group to generalize descriptions and concepts concerning health care

    The questionnaire, intended to complement the interview, was designed by the
    organization. Roughly it contained similar issues as the interview, expressed
    as open-ended questions, and also some quantitative issues such as duration
    of illness. Questions beyond the scope of this study were also included, such
    as beliefs about etiology. Due to the limited amount of time, these matters
    were not introduced in the interview, and were omitted from analysis.

    The follow-up meeting 1 year later was attended by 5 of the 12 participants,
    all of them women. The major findings from the initial analysis were then
    presented and discussed in depth. Fieldnotes from this meeting and the
    questionnaires were used to clarify and supplement issues from the group

    3. Results

    CFS patients said that lack of acknowledgement could be even worse than the
    burden of symptoms. They wanted their doctors to ask questions, listen to
    them and take them seriously, instead of behaving degrading or patronizing.
    Many participants felt that the doctors psychologized too much, interpreting
    the exhaustion as depression or trivializing the symptoms. The participants
    described how doctors' lack of knowledge about the condition would lead to
    long-term uncertainty or maltreatment. Even with doctors who were supportive
    and believed in the patients, it would usually take months and sometimes
    years until a medical conclusion would be reached, or other disorders were
    ruled out. Increased physical activity had been recommended, but most of the
    informants experienced that this made them worse. These findings are
    elaborated below.

    3.1. Lack of acknowledgement can be even worse than the burden of symptoms

    Several participants remarked that although the symptoms were terrible, even
    worse was not being believed by their doctors. When all tests came out as
    normal, they would become labelled as healthy, even though their level of
    functioning was deteriorating. Repeated stories referred to doctors who
    appeared to have more confidence in themselves than listening to the
    patients. Our participants wanted the doctor to ask questions, listen to
    them and take them seriously. Instead, there were many examples of events
    perceived as degrading by the patients:

    'Sometimes you meet such an arrogant attitude that you
    get... you get scared of them.' (#4)

    Yet, those who were satisfied with their GPs, told about doctors who during a
    long-term relationship had showed that s/he believed in them. Although few of
    these doctors had given a diagnosis, they were perceived as examining the
    patients thoroughly and loyally accepted their information. One participant
    told that the doctor had read an article about postviral fatigue syndrome and
    hypotension, and sent it to her. A woman explained her positive experiences:

    'I guess I've been lucky, because my GP knew me from I
    was a kid. She knew that if I said I was ill, I was ill.' (#2)

    Another woman had come to the emergency room due to pain she did not relate
    to CFS. When they heard that she was a CFS patient, she was sent back home.
    She felt she was rendered suspect because of her illness. After 2 days with
    severe pain she was operated in the uttermost moment. Many participants felt
    that the doctors psychologized too much. One woman got ill as a child. She
    was therefore automatically labelled as a victim of problems at home or in
    school. Another one met a doctor who believed that she tried to escape from
    her job situation through her symptoms. The exhaustion would quickly be
    interpreted as depression:

    'And then I met a doctor who was convinced that I was
    depressed. He asked if I cried a lot. In fact, I didn't cry more
    than I laughed during that period. So crying was not a
    problem. Then I said: 'I can't do anything at all.' Well, then
    of course I was depressed because I didn't manage anything,
    or was in lack of initiative. But that was not the problem. I
    wanted to do all sorts of things, but as soon as I tried, I
    became exhausted and had to go to bed again.' (#6)

    Generally, the participants felt that the doctors' interest for them and
    their illnesses diminished as time went by and no cause or treatment was
    found. One of them was told by his doctor that he would have been a lot more
    interesting if he had suffered from a heart disease. Another participant
    reported giving an article about CFS to his internist. A few weeks later he
    received a bill from the physician, who demanded a fee to study the article.
    One woman mentioned that when she gave her doctor some information material
    about CFS, he was not willing to study it:

    'The doctor said: 'I don't think I have the time to study
    this'. You'll have to find another GP.' (#1)

    Doctors were often perceived as inactive, wanting to get rid of the patient
    as quickly as possible. The participants wished to be taken seriously, even
    being women in their forties. The woman above added that she felt that her
    symptoms were trivialized:

    '...they did not listen to me because I was of no interest. I
    was a typical housewife at a difficult age. Probably
    menopausal symptoms and things like that. Was a bit
    stressed and frustrated. Had grown-up kids and felt
    uncomfortable, and didn't find myself and so on.' (#1)

    3.2. Lack of knowledge can lead to long-term uncertainty or maltreatment

    A common impression among our participants was that their GPs held a low
    level of knowledge about CFS. Since they did not understand, they could not
    give any advice. Two women told about doctors who never examined them
    properly, even after having seen them for several years, claiming that they
    did no efforts at all to find out whether they were ill or not. Some of the
    participants were not even able to tell their doctor what was wrong with them
    before he gave them a prescription It seemed to represent an 'easy exit' for
    the doctors.

    'First I came to the emergency room. I had two red eyes, I
    didn't manage my job, I couldn't remember what to do, I
    couldn't walk up hills. Everything was wrong. They looked
    me in the eyes and said: 'Nyeah, it's probably a virus. Here
    are eye drops if it is bacteria. Keep on working.' (#6)

    Even with doctors who were supportive and believed in the patients, it would
    usually take months and sometimes years until a medical conclusion would be
    reached, or other disorders were ruled out. In the meanwhile, the doctor
    hoped that the symptoms would disappear. A woman who felt well taken care of,

    'When the doctor is so confused, it is important to refer
    people to specialists. What concerns this illness, they said to
    me at the university hospital: 'You have listed a whole lot of
    neurological symptoms. Now we'll take some tests, and then
    we'll exclude other things, other dangerous conditions.
    Exclude MS, cerebral tumour etc.' (#8)

    Many of the GPs had more or less reluctantly referred their patients to
    specialists for investigation, and most of our participants had been seen by
    neurologists at a hospital department with a special interest in CFS. This
    was usually the place where the diagnosis had been concluded. The neurol-
    ogists had also offered advice and guidance about diet and training. Similar
    levels of knowledge were called for among GPs:

    'I don't believe that anything will happen before one day
    there is a sign at the door of a doctor: 'Specialist of ME.' (#8)

    Both specialists and GPs had recommended increased physical activity. The
    patients were encouraged to go to work, do exercise, and go out to see other
    people. Many of them had been advised to stretch their physical limits and
    referred to physiotherapists for exercise. However, most of the informants
    had experienced that this would worsen their condition. Some of them thought
    they would have been better today if they had not followed this advice. One
    participant was referred to a rehabilitation center, and this led to a total
    collapse. Still he was recommended to keep on training:

    'I said: 'It's crazy! I have problems walking up a hill, and
    now I'm going to a center for physical training!' Ok, I'd try.
    So I went. And after two days I collapsed.' (#4)

    4. Discussion and conclusion

    4.1. Discussion

    4.1.1. Validity and transferability

    This is a case study approaching experiences and associated attitudes of CFS
    patients who belong to a patient organization. Material from the interview
    and the questionnaire confirmed that all participants had undergone
    thoroughly diagnostic testing at the hospital. We conclude that our sample
    covers a sufficient content validity regarding the CFS diagnosis. We were
    interested in the stories from people with a special awareness for quality
    care, realizing that CFS patients who are members of an organization, may
    differ from other CFS patients. On one hand, they may represent the most
    serious and disabling stages of the disorder, on the other hand, they may be
    more active and articulate than patients who do not organize. Membership
    might represent a bias of bad health care experiences. We therefore took this
    as a challenge to look across the material for variations and nuances, and to
    acknowledge substantial wishes for improvement of health services, regardless
    of their quantity or distribution. We do not claim transferability of these
    experiences to all CFS patients, yet consider the phenomena described as
    relevant for any medical encounter where the patient suffers from a medically
    unexplained disorder. The better part of reality would probably be more
    precicely described by a different sample The moderator's initial dedication
    for improvement of health services for this group of patients may have
    facilitated trust and alliances with the participants by confirming an
    ethical commitment to their expressed needs.

    The number of participants present in the group interview (more than we had
    expected!) limited the amount of information from each of them, and some
    remarked afterwards that it was too brief. However, the atmosphere was
    relaxed, and the associative creativity during the interview contributed to a
    rich and diverse material. Data collection was limited to one group meeting,
    which however presented a broad diversity of experiences. Our methodological
    approach was not aiming for saturation, since the study did not hold an
    ambition to describe all possible experiences. Concentrating on stories from
    members of the organization, we were fully aware that other groups may have
    yielded different data. The information obtained through the questionnaire
    and the follow-up meeting validated and complemented the main findings.

    4.1.2. What is known from before - what does our study add?

    Patients with persistent, subjective symptoms without objective findings,
    such as CFS and other MUPS, hold a low ranking in the medical hierachy. While
    conditions like myocardial infarction, leukaemia and brain tumour are ranked
    highest by doctors, fibromyalgia and anxiety neurosis are among the lowest
    [20]. Such attitudes are reflected in the comment from the participant in our
    study, who said that she felt she was of no interest for her doctor. Edwards
    et al. have described patients' feeling of being let down and disbelieved
    when seeking help [21].

    Our study also confirms previous studies about experiences of stigmatization
    in patients with CFS encountering health care [7,14,22]. Some doctors
    characterizes CFS patients by lacking stoicism, and use pejoratively
    stereotypes to describe certain personality traits supposed to cover the
    whole group of patients [10,12,23]. Patients perceive such attitudes as
    questioning their morality and credibility, asking whether they are really
    sick [12,22,24].

    Yet, although acknowledgement of symptoms as well as person is necessary for
    quality care, it is not sufficient. The participants in our study challenge
    Deale and Wessely's understanding that medical care is evaluated less on the
    ability of doctors to treat CFS, and more on their interpersonal and
    informational skills [14]. Understanding the CFS condition itself is urgently
    called for by the participants in our study, who want their doctors to be
    better informed and less ignorant in order to provide adequate counseling.
    Within this field of experienced uncertainty, a stronger commitment to
    evidence based practice might improve the doctors capacity to give his or
    her patients adequate information about CFS [22,25,24].

    Our participants emphasize the specific importance of reaching a diagnosis
    for coping [7] by sharing their experiences from the frustration appearing
    when time goes by and no conclusion regarding diagnosis or treatment has been
    achieved. Previous studies have emphasized patients' view on diagnosis
    [11,26,27], not only as legitimation of the condition, but also as a path to
    reconciliation and coping [7,28]. The NICE Guidelines recommend diagnosis to
    be reached within 4 months for adult patients [4]. Considering a CFS
    diagnosis as a provisional tool for understanding and reconciliation may
    support recovery for the patient, while attributing the diagnosis a warning
    about any physical activity would probably function counterproductively. The
    way the diagnosis is presented, is therefore crucial for quality care.

    Our study adds to the knowledge base on doctors' uncertainty - when you do
    not know what to suggest, you therefore have nothing to offer [11]. Analysis
    revealed stories about doctors who lack knowledge but yet refuse being
    provided with information, and doctors who propose treatment which makes the
    patient feel worse. While physical activity is beneficial for a lot of health
    problems, the core symptom of CFS is actually postexertion fatigue and
    malaise [1]. Movement therapy based on carefully limited workload has shown
    promising results for CFS patients [29], and graded exercise therapy has been
    useful for some of these patients [1]. However, patients with this condition
    should not be adviced to undertake vigorous exercise [4].

    Our participants demonstrated some of the problems which can be experienced
    by patients when doctors do not know what to do. They demonstrate specific
    areas where quality of care can be improved by implementing evidence and
    guidelines among healthcare professionals. Special efforts would yet be
    needed to develop adherence to guidelines within a field where GPs seem to
    have strong opinions about the 'real' nature of the disorder [30,10,31].

    4.1.3. Conflicting explanatory models on MUDS

    Our findings indicate that quality care for CFS patients suffer from more
    than indifference and ignorance. The tensions arising from conflicting
    illness understanding seem to create serious obstacles in the interaction
    between doctors and patients with CFS. Conflicts may arise when the two parts
    have different beliefs about the nature and cause of the illness. According
    to Kleinman, explanatory models are 'the notions about an episode of
    sickness and its treatment' employed by all the persons involved in the
    clinical process, including beliefs about etiology, time and mode of onset of
    symptoms, pathophysiology, course of sickness, and treatment [6]. Some of the
    participants in our study felt that they were unduly labelled as depressed,
    perceiving this as a patronizing provocation, never having felt psychological
    problems, and being convinced of the bodily character of their symptoms.

    We did not interview the doctors met by our participants, and hence do not
    know what actually took place. Nevertheless, the reported events correspond
    well with the sceptical viewpoints towards the diagnosis presented by doctors
    in other studies [10,12,31]. Previous research has described similar
    uncreative negotiations as 'the shame-blame-game', where all interaction
    concentrates on body-mind arguments about whether CFS is 'really' a
    psychological or a physical condition [24].

    Burton turns down the idea that most MUPS are the result of a single process
    of somatization or mental distress. He concludes that in these conditions,
    there is good evidence for the impact of the interaction between physiology,
    personality, life experiences, health cognitions, and healthcare experiences
    [9]. Recent biopsychosocial models focusing feedback systems and homeostasis,
    such as The Cognitive Activation Theory of Stress (CATS) [32], transcend the
    dichotomous perseverance on classifying CFS as either body or mind [10].
    Sustained activation has been suggested as the underlying mechanism for
    processes underlying subjective health complaints [33]. Within the framework
    of these models, even measurable bodily processes are accessible for
    cognitive input.

    4.2. Conclusion

    Our findings support a hypothesis that the current medical scepticism and
    ignorance regarding CFS shapes the context of medical care and the illness
    experiences of CFS patients, who may feel they neither get a proper
    assessment nor management. GPs need more knowledge and a broader
    understanding of the condition, making it possible to individualize the
    available strategies for diagnosis and management according to the patient's
    capacity and responses.

    4.3. Practice implications

    Being met with dignity and respect is especially important for people with
    chronic illness. However, doctors' feelings of helplessness and controversies
    about explanatory models may transform into behavior perceived as degrading
    by the patient [8,34], thereby obstructing quality care. The body-mind
    controversies arising from the biomedical model seems to be an especially
    important barrier for finding common ground between patients with CFS and
    their doctors. Development of comprehensive explanatory models which
    transcend the dichotomous explanatory models [32] can help doctors and
    patients to expand their understanding of the mechanisms underlying the
    complex symptomatology of CFS. Elaborating a diversity of strategies involved
    in the diagnosis and treatment plans of primary care problems that are
    uncertain and complex could also contribute to better care of CFS patients

    However, many doctors are not yet even prepared to acknowledge the CFS entity
    itself, but regards it as a dubious category [31]. Doctors' reluctancy
    towards giving this diagnosis is known from before [11,36], and confidence
    with making a diagnosis and management is low [37]. According to the British
    Chief Medical Officer Kenneth Calman (2002), chronic fatigue syndrome should
    be recognized as a real entity, which is distressing, debilitating, and
    affects a very large number of people [38].

    To the patients the diagnosis may function as a tool that enables them to
    tell other people what is wrong with them [15,11]. Receiving a diagnosis was
    mentioned by our participants as a very important aspect, since the
    uncertainty during a period of increasingly debilitating symptoms may add
    strongly to the burden of suffering for the patient. Our findings indicate
    that GPs need to know more about why and how the diagnosis of CFS should be
    set. According to clinical guidelines, the CFS diagnosis can be concluded by
    the typical history of excessive, characteristic and lasting fatigue, when
    adequate differential diagnoses have been thoroughly excluded [4]. Often, a
    specialist referral is necessary. When diagnosis is clear, there is no
    apparent medical reason to withhold it from the patient. On the contrary, a
    diagnosis may constitute the starting point of a process of recovery and
    reconsiliation [39].

    Intervention studies indicate that cognitive behavioral therapy and graded
    exercise therapy may be helpful for some CFS patients [5,40]. We still do not
    know how these modalities can provide the most benefit, and for whom. GPs
    need to learn how to offer evidence based treatment modalities such as
    cognitive behavioral therapy to patients with CFS without confining the
    disorder within the concepts of somatization or other kind mental diseases
    [9,41]. Our informants complained about the exercise recommendations which
    had seemed to make their symptoms worse. Since CFS per definition is a
    condition where postexertional malaise is one of the typical symptoms,
    undifferentiated physical exercise appears to be a questionable
    recommendation. However, the NICE Guidelines present a feasable program for
    individualized and tailored physical activity which could safely be offered
    to CFS patients under monitoring of effects and side effects [4].

    The NICE guidelines emphasize the need of patient participation and shared
    decision-making [4]. CFS patients' reports about patronizing attitudes and
    ignorance among doctors call for development of evidence based strategies and
    empowerment of patients, acknowledging the patients' understanding of
    symptoms and the complex nature of the disease.


    Table 1. CDC 1994 case definition of CFS [2]
    Clinically evaluated, medically unexplained fatigue of at least 6 months
    duration that is
    New onset (not life long)
    Not result of ongoing exertion
    Not substantially alleviated by rest
    A substantial reduction in previous level of activities

    The occurrence of four or more of the following symptoms
    Subjective memory impairment
    Sore throat
    Tender lymph nodes
    Muscle pain
    Joint pain
    Unrefreshing sleep
    Postexertional malaise lasting more than 24 h
    Exclusion of all relevant differential diagnoses.


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    [This Message was Edited on 08/02/2008]