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

Murph

:)
Messages
1,792

  • 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
    Abstract

    BACKGROUND:
    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.

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

    METHODS:
    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.

    RESULTS:
    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.

    CONCLUSIONS:
    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.

    PMID:
    29856774
    DOI:
    10.1371/journal.pone.0197811
 

Wishful

Senior Member
Messages
5,644
Location
Alberta
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.
 

Tom Kindlon

Senior Member
Messages
1,734
New:
A statement from one of the authors, Lily Chu, MD, MSHS:
---
We have just published an article about symptoms and timing associated with post-exertional malaise (PEM) in PLOS One. Click here http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0197811 and see abstract below. The article is open access for anyone who wants to read it in full, thanks to funding from Stanford ME/CFS Initiative https://med.stanford.edu/chronicfatiguesyndrome.html supporters.

Although PEM has been discussed before in clinical articles, some studies, and patient accounts, formal studies directly and open-endedly asking patients about their symptoms and timing of PEM are lacking. Few studies examine the breadth of symptoms nor timing in the same study with the exception of 2 published studies by the Workwell Foundation (here https://www.ncbi.nlm.nih.gov/pubmed/20095909 and here https://www.ncbi.nlm.nih.gov/pubmed/21208154 ). However those studies covered a younger group who were all females and could undergo back-to-back CPET. Our study includes men, older people, and asked about PEM symptoms during the course of regular life. We also examined differential effects of physical/ cognitive vs. emotional stressors and examined timing in greater detail.

We hope the article will help mainstream clinicians better diagnose ME/CFS.
It is not enough to say that "symptoms" are exacerbated in PEM: clinicians need more specific guidance about which symptoms to recognize PEM and avoid thinking it is only post-exertional fatigue. We also hope that the article will help inform the design, analysis, and interpretation of future PEM studies. Finally, the published article may provide support for any work/ school accommodations and other situations when it comes to describing what symptoms commonly make up PEM and its delayed/ prolonged nature.

---
Source: PLoS One
Vol 13, #6, p e0197811
Date: June 1, 2018

Deconstructing post-exertional malaise in myalgic
encephalomyelitis/chronic fatigue syndrome: A patient-centered, cross-sectional survey

Lily Chu(*), Ian J. Valencia, Donn W. Garvert, Jose G. Montoya
- Stanford ME/CFS Initiative, Division of Infectious Diseases and Geographic Medicine, Stanford University School of Medicine, Stanford, California, United States of America
* Corresponding author. Email: lchu1@stanford.edu

Abstract

Background

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.

Objectives

To describe symptoms associated with and the time course of PEM

Methods

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.
Results

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.

Conclusions

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.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0197811

https://www.facebook.com/TomKindlonMECFS/posts/1044420542372737