The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Patients’ Experiences

Kristina  Tellmar; Petra  Christensson; Gabriella Bernhoff; Bo Christer  Bertilson; Hanne Konradsen

The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Patients’ Experiences

Kristina Tellmar, Petra Christensson, Gabriella Bernhoff, Bo Christer Bertilson, Hanne Konradsen

Research output: Contribution to journal › Journal article › Research › peer-review

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Abstract

Background: Myalgic encephalomyelitis/chronic fatigue syndrome is a disease that negatively affects patients’ quality of life. Previous research has shown that these patients are commonly not taken seriously when seeking medical attention.Aim: The aim was to examine the experiences of patients with ME/CFS regarding their interaction with Swedish primary healthcareprofessionals.Method: The study used a qualitative and exploratory design, taking place in a specialist clinic in Sweden. Data consisted of interviews with 13 patients with ME/CFS, which were analysed using content analysis.Findings: For patients, it was Feeling truly connected during the period before they received a diagnosis. Time is an important factor,and in the phase from initial symptoms to diagnosis, Knowledge is power.Conclusion: Patients with ME/CFS were met with different levels of knowledge and interest from healthcare professionals. Thesechallenges might be related to the relative unawareness and lack of knowledge of the disease and the underlying cultural scepticismstill present

Original language	English
Journal	EC Neurology
Volume	14
Issue number	2
Pages (from-to)	49-56
Number of pages	8
Publication status	Published - 2022

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The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Patients’ Experiences. / Tellmar, Kristina ; Christensson, Petra ; Bernhoff, Gabriella; Bertilson, Bo Christer ; Konradsen, Hanne.

In: EC Neurology, Vol. 14, No. 2, 2022, p. 49-56.

Research output: Contribution to journal › Journal article › Research › peer-review

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abstract = "Background: Myalgic encephalomyelitis/chronic fatigue syndrome is a disease that negatively affects patients{\textquoteright} quality of life. Previous research has shown that these patients are commonly not taken seriously when seeking medical attention.Aim: The aim was to examine the experiences of patients with ME/CFS regarding their interaction with Swedish primary healthcareprofessionals.Method: The study used a qualitative and exploratory design, taking place in a specialist clinic in Sweden. Data consisted of interviews with 13 patients with ME/CFS, which were analysed using content analysis.Findings: For patients, it was Feeling truly connected during the period before they received a diagnosis. Time is an important factor,and in the phase from initial symptoms to diagnosis, Knowledge is power.Conclusion: Patients with ME/CFS were met with different levels of knowledge and interest from healthcare professionals. Thesechallenges might be related to the relative unawareness and lack of knowledge of the disease and the underlying cultural scepticismstill present",

author = "Kristina Tellmar and Petra Christensson and Gabriella Bernhoff and Bertilson, {Bo Christer} and Hanne Konradsen",

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AU - Konradsen, Hanne

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