Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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DePaul: Educational Priorities for Healthcare Providers and Name Suggestions for CFS

Discussion in 'Latest ME/CFS Research' started by mango, Feb 18, 2016.

  1. mango

    mango Senior Member

    Educational Priorities for Healthcare Providers and Name Suggestions for Chronic Fatigue Syndrome: Including the Patient Voice

    Laura Nicholson*, Abigail Brown, Leonard A Jason, Diana Ohanian, and Kelly O’Connor

    Center for Community Research, DePaul University, Chicago, USA

    Surveys over the past two decades found that patients, advocates, and researchers want the name chronic fatigue syndrome (CFS) to be changed because this label minimizes the severity of the illness (Taylor, Friedberg, & Jason, 2001).

    The present study sought to qualitatively investigate patient views on the illness label CFS and healthcare providers’ knowledge of CFS.

    A patient-research organization asked members two open-ended questions regarding preferences for specific illness labels and educational suggestions for healthcare providers. Responses to both questions were coded thematically by multiple, trained research assistants.

    Findings suggested that 96% of participants disliked/strongly disliked CFS. Myalgic encephalomyelitis (ME) was the majority’s first preference (55%) and was chosen four times more than any other name given.

    Four themes emerged for educational concerns: attitudes of healthcare providers, symptomatology, research, and implications of inadequate education. The most frequent subtheme (37%) was patients wanting healthcare providers to acknowledge that this is a real/serious illness.

    Diagnostic labels can influence providers’ perceptions of diseases and affect quality of care and communication between providers and patients. Therefore patients should be stakeholders in the process of name change. Understanding patient perspectives on educational priorities and illness labels will facilitate improved communication between providers and patients.

    Keywords: ME; CFS; ME/CFS; Diagnostic label; Patient perspectives; Physician attitudes
    ahimsa, leela, Roy S and 9 others like this.
  2. barbc56

    barbc56 Senior Member


    My rheumatologist when I lived in Chicago also did medical research at DePaul. Fifty percent for each.

    It's an excellent institution.

    ETA I forgot. He was not the one who originally diagnosed me. I only saw him twice before my insurance providers changed. I edited the above to reflect this.
    Last edited: Feb 18, 2016
  3. Dolphin

    Dolphin Senior Member

    I just read this. As papers go, it is fairly easy to read. The only statistics used that I recall are percentages. It's not heavy on psychological jargon. And of course it's not a paper on natural science so you don't need knowledge in that area.
  4. Dolphin

    Dolphin Senior Member

    With regard to the percentages, the survey involved open-ended questions so people might not have mentioned things would still think they are important:


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