Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey
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....
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| description | 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 |
| doi_str_mv | 10.1371/journal.pone.0197811 |
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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.</description><identifier>ISSN: 1932-6203</identifier><identifier>EISSN: 1932-6203</identifier><identifier>DOI: 10.1371/journal.pone.0197811</identifier><identifier>PMID: 29856774</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>Adult ; Biology and Life Sciences ; Care and treatment ; Chronic fatigue syndrome ; Cognitive ability ; Cross-Sectional Studies ; Diagnosis ; Disease control ; Emotions ; Encephalomyelitis ; Exercise ; Fatigue ; Fatigue Syndrome, Chronic - complications ; Fatigue Syndrome, Chronic - physiopathology ; Female ; Goodness of fit ; Headache ; Humans ; Infectious diseases ; Inflammation ; Lupus ; Male ; Medical research ; Medicine ; Medicine and Health Sciences ; Middle Aged ; Mood ; Multiple sclerosis ; Muscle pain ; Muscles ; Pain ; Patient-centered care ; Patients ; Physical Exertion ; Physical fitness ; Research and Analysis Methods ; Researchers ; Sleep ; Social Sciences ; Statistical tests ; Surveys and Questionnaires</subject><ispartof>PloS one, 2018-06, Vol.13 (6), p.e0197811-e0197811</ispartof><rights>COPYRIGHT 2018 Public Library of Science</rights><rights>2018 Chu et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>2018 Chu et al 2018 Chu et al</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c692t-854805278b296c1c1c869cc65f7c2a1d10c5445264348ad86db3205a20cda8b03</citedby><cites>FETCH-LOGICAL-c692t-854805278b296c1c1c869cc65f7c2a1d10c5445264348ad86db3205a20cda8b03</cites><orcidid>0000-0002-0691-3586</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5983853/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5983853/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,864,885,2102,2928,23866,27924,27925,53791,53793</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/29856774$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><contributor>Nater, Urs M.</contributor><creatorcontrib>Chu, Lily</creatorcontrib><creatorcontrib>Valencia, Ian J</creatorcontrib><creatorcontrib>Garvert, Donn W</creatorcontrib><creatorcontrib>Montoya, Jose G</creatorcontrib><title>Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey</title><title>PloS one</title><addtitle>PLoS One</addtitle><description>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.</description><subject>Adult</subject><subject>Biology and Life Sciences</subject><subject>Care and treatment</subject><subject>Chronic fatigue syndrome</subject><subject>Cognitive ability</subject><subject>Cross-Sectional Studies</subject><subject>Diagnosis</subject><subject>Disease control</subject><subject>Emotions</subject><subject>Encephalomyelitis</subject><subject>Exercise</subject><subject>Fatigue</subject><subject>Fatigue Syndrome, Chronic - complications</subject><subject>Fatigue Syndrome, Chronic - physiopathology</subject><subject>Female</subject><subject>Goodness of fit</subject><subject>Headache</subject><subject>Humans</subject><subject>Infectious diseases</subject><subject>Inflammation</subject><subject>Lupus</subject><subject>Male</subject><subject>Medical research</subject><subject>Medicine</subject><subject>Medicine and Health Sciences</subject><subject>Middle 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myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2018-06-01</date><risdate>2018</risdate><volume>13</volume><issue>6</issue><spage>e0197811</spage><epage>e0197811</epage><pages>e0197811-e0197811</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><abstract>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.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>29856774</pmid><doi>10.1371/journal.pone.0197811</doi><tpages>e0197811</tpages><orcidid>https://orcid.org/0000-0002-0691-3586</orcidid><oa>free_for_read</oa></addata></record> |
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| source | MEDLINE; DOAJ Directory of Open Access Journals; Public Library of Science (PLoS) Journals Open Access; EZB-FREE-00999 freely available EZB journals; PubMed Central; Free Full-Text Journals in Chemistry |
| subjects | Adult Biology and Life Sciences Care and treatment Chronic fatigue syndrome Cognitive ability Cross-Sectional Studies Diagnosis Disease control Emotions Encephalomyelitis Exercise Fatigue Fatigue Syndrome, Chronic - complications Fatigue Syndrome, Chronic - physiopathology Female Goodness of fit Headache Humans Infectious diseases Inflammation Lupus Male Medical research Medicine Medicine and Health Sciences Middle Aged Mood Multiple sclerosis Muscle pain Muscles Pain Patient-centered care Patients Physical Exertion Physical fitness Research and Analysis Methods Researchers Sleep Social Sciences Statistical tests Surveys and Questionnaires |
| title | Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2024-12-22T13%3A13%3A49IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-gale_plos_&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Deconstructing%20post-exertional%20malaise%20in%20myalgic%20encephalomyelitis/%20chronic%20fatigue%20syndrome:%20A%20patient-centered,%20cross-sectional%20survey&rft.jtitle=PloS%20one&rft.au=Chu,%20Lily&rft.date=2018-06-01&rft.volume=13&rft.issue=6&rft.spage=e0197811&rft.epage=e0197811&rft.pages=e0197811-e0197811&rft.issn=1932-6203&rft.eissn=1932-6203&rft_id=info:doi/10.1371/journal.pone.0197811&rft_dat=%3Cgale_plos_%3EA541074980%3C/gale_plos_%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=2049519062&rft_id=info:pmid/29856774&rft_galeid=A541074980&rft_doaj_id=oai_doaj_org_article_a77453f08e1a41088198304022333c6f&rfr_iscdi=true |