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Deconstructing post-exertional malaise in ME/CFS: A patient-centered, cross-sectional survey.

Discussion in 'Latest ME/CFS Research' started by Murph, Jun 3, 2018.

  1. Murph

    Murph :)


    • PLoS One. 2018 Jun 1;13(6):e0197811. doi: 10.1371/journal.pone.0197811. eCollection 2018.
      Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey.
      Chu L1, Valencia IJ1, Garvert DW1, Montoya JG1.
      Author information

      Post-exertional malaise (PEM) is considered to be the hallmark characteristic of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). Yet, patients have rarely been asked in formal studies to describe their experience of PEM.

      To describe symptoms associated with and the time course of PEM.

      One hundred and fifty subjects, diagnosed via the 1994 Fukuda CFS criteria, completed a survey concerning 11 symptoms they could experience after exposure to two different types of triggers. We also inquired about onset and duration of PEM and included space for subjects to write in any additional symptoms. Results were summarized with descriptive statistics; McNemar's, paired t-, Fisher's exact and chi-square goodness-of-fit tests were used to assess for statistical significance.

      One hundred and twenty-nine subjects (90%) experienced PEM with both physical and cognitive exertion and emotional distress. Almost all were affected by exertion but 14 (10%) reported no effect with emotion. Fatigue was the most commonly exacerbated symptom but cognitive difficulties, sleep disturbances, headaches, muscle pain, and flu-like feelings were cited by over 30% of subjects. Sixty percent of subjects experienced at least one inflammatory/ immune-related symptom. Subjects also cited gastrointestinal, orthostatic, mood-related, neurologic and other symptoms. Exertion precipitated significantly more symptoms than emotional distress (7±2.8 vs. 5±3.3 symptoms (median, standard deviation), p<0.001). Onset and duration of PEM varied for most subjects. However, 11% reported a consistent post-trigger delay of at least 24 hours before onset and 84% endure PEM for 24 hours or more.

      This study provides exact symptom and time patterns for PEM that is generated in the course of patients' lives. PEM involves exacerbation of multiple, atypical symptoms, is occasionally delayed, and persists for extended periods. Highlighting these characteristics may improve diagnosis of ME/CFS. Incorporating them into the design of future research will accelerate our understanding of ME/CFS.

    Dolphin, alkt, Wishful and 4 others like this.
  2. Wishful

    Wishful Senior Member

    My guess is that the 11% with a consistent 24-hr delay is a sub-group triggering on the IFN-g produced 24 hrs after physical exertion. I'm in that sub-group.

    Surveys such as this should separate responses for physical exertion triggers and cognitive or emotional ones. I expect that at least for this sub-group, they'd find different delay times for the different triggers. I filled out such a survey (maybe this one?) a few months ago, and left feedback to that effect, since I strongly felt that there were different responses to the questions depending on which trigger.
    Murph and alkt like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member

    A statement from one of the authors, Lily Chu, MD, MSHS:

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