Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies – Source: Patient Education and Counseling, Aug 13, 2007

Objective: To provide insight into patients’ and doctors’ experiences with CFS.

Methods: We compiled available qualitative studies and applied meta-ethnography to identify and translate across the studies. Analysis provided second-order interpretation of the original findings and developed third-order constructs from a line of arguments.

Results: Twenty qualitative studies on CFS experiences were identified.

  • Symptom experiences and the responses from significant others could jeopardize the patients’ senses of identity.
  • They felt severely ill, yet blamed and dismissed. Patients’ beliefs and causal attributions oppose the doctor’s understanding of the condition. For the patient, getting a diagnosis and knowing more was necessary for recovery. Doctors were reluctant towards the diagnosis, and struggle to maintain professional authority.
  • For patients, experience of discreditation could lead to withdrawal and behavioral disengagement.

  • Conclusion:

  • The identities of CFS patients are challenged when the legitimacy of their illness is questioned.
  • This significant burden adds to a loss of previously established identity and makes the patient more vulnerable than just suffering from the symptoms.
  • CFS patients work hard to cope with their condition by knowing more, keeping a distance to protect themselves and learning more about their limits.

  • Practice Implications: Doctors can support patients’ coping by supporting the strong sides of the patients instead of casting doubt upon them.

    Source: Patient Education and Counseling. 2007 Aug 13; [E-publication ahead of print]. PMID: 17698311, by Larun L, Malterud K. Norwegian Knowledge Centre for the Health Services, Norway; Department of Public Health and Primary Health Care, University of Bergen, Norway.

    1 Star2 Stars3 Stars4 Stars5 Stars (194 votes, average: 3.05 out of 5)
    Loading...



    One thought on “Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies – Source: Patient Education and Counseling, Aug 13, 2007”

    1. ilseke says:

      When a patient’s illness is not taken seriously, major contributing factors can be missed. For example, I know of someone with an undiagnosed sleeping disorder who was prescribed CBT, because according to the doctor the illness was a ‘psychological’ problem.
      If this patient had believed her doctor she would have had an extra problem: not only an unknown sleeping disorder, but also a ‘psychological problem’ which she would not be able to get rid of.
      Becasue the measure to determine progress in that area would be the tiredness. Progress would mean a decrease in tiredness.
      This would probably not have happened until the sleeping disorder were discovered and treated.
      As with any disease the psychological factor is important.
      However, to simplify the whole disease as ‘psychological’ does indeed certainly not validate the patients experience, and is perhaps not even in line with reality.
      As someone’s ‘psychological state’ is important in all coping and recovery, a doctor’s responsibility should also include fostering a positive state of mind in his/her patients, including those with ME-CFS.
      This study is a positive contribution in helping doctor’s treat patients with ME-CFS in such a way that they are most helped, and find support in the process of coping with the disease.

    Leave a Reply