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Post-exertional malaise
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===<span id="DSQ-PEM">The DePaul Symptom Questionnaire (DSQ) subscale</span> === The instrument most commonly used to assess PEM is a subscale from the [[DePaul Symptom Questionnaire]] (DSQ). The DSQ is a 54-item questionnaire was developed in 2010 to operationalize the Canadian Consensus Criteria, providing concrete directives to assess ME/CFS-symptoms with their frequency and severity.<ref name="CCC-REVISED">{{Cite journal|url=https://www.semanticscholar.org/paper/The-Development-of-a-Revised-Canadian-Myalgic-Case-Jason-Evans/b2a2564f55daa57721d24502df6bd6c161238ff0 | title = The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition | last= Jason | first = Leonard A. | author-link = Leonard Jason | last2 = Evans | first2 = Meredyth Anne | authorlink2 = Meredyth Evans | date = 2010 | language=en | last3 = Porter | first3 = Nicole | authorlink3 = Nicole Porter | last4 = Brown | first4 = Molly | authorlink4 = Molly Brown | last5 = Brown | first5 = Abigail A. | authorlink5 = Abigail Brown | last6 = Hunnell | first6 = Jessica | last7 = Anderson | first7 = Valerie C. | last8 = Lerch | first8 = Athena | last9 = Meirleir | first9 = Kenny de | authorlink9 = Kenny De Meirleir|journal=Am J Biochem and Biotech|volume=6|issue=2|pages=120-135}}</ref> In a Norwegian comparison with physician assessments, The DSQ scored a sensitivity of 92% and a specificity of 75%.<ref name="Strand2016">{{Cite journal | last = Strand | first=Elin B. | author-link = Elin Strand | last2 = Lillestøl | first2 = Kristine | last3 = Jason | first3 = Leonard A. | authorlink3 = Leonard Jason | last4 = Tveito | first4 = Kari | last5 = Diep | first5 = Lien My | last6 = Valla | first6 = Simen Strand | last7 = Sunnquist | first7 = Madison | last8 = Helland | first8 = Ingrid B. | last9 = Herder | first9 = Ingrid | date = 2016-01-02 | title = Comparing the DePaul Symptom Questionnaire with physician assessments: a preliminary study|url=https://www.tandfonline.com/doi/abs/10.1080/21641846.2015.1126026|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=4|issue=1 | pages = 52–62|doi=10.1080/21641846.2015.1126026|issn=2164-1846}}</ref> This indicated that the DSQ is a useful tool in detecting and screening symptoms, but that a follow-up medical examination is necessarily to confirm the diagnosis and identify possible exclusionary medical and psychiatric disorders. The post-exertional malaise subscale on the DSQ (DSQ-PEM) particularly demonstrated excellent clinical utility as it was able to differentiate between ME/CFS patients and controls.<ref name="Murdock2017">{{Cite journal | last = Murdock | first = Kyle W. | last2 = Wang | first2 = Xin Shelley | last3 = Shi | first3 = Qiuling | last4 = Cleeland | first4 = Charles S. | last5 = Fagundes | first5 = Christopher P. | last6 = Vernon | first6 = Suzanne D. | date = Apr 2017 | title = The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/27600520|journal=Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation|volume=26|issue=4 | pages = 913–921|doi=10.1007/s11136-016-1406-3|issn=1573-2649|pmc=5336422|pmid=27600520}}</ref> In early 2018 the Common Data Elements working group on PEM formed by [[National Institute of Neurological Disorders and Stroke|NINDS]] and the CDC, recommended the use of five items from the DSQ to measure PEM.<ref name="CDE">{{Cite web | title = Post-exertional Malaise Subgroup Statement of Purview | last = NINDS CDE Project Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Post Exertional Malaise Subgroup|website =[[National Institutes of Health]]|access-date=2021-02-21|url=https://www.commondataelements.ninds.nih.gov/sites/nindscde/files/Doc/MECFS/PEM_Subgroup_Summary.pdf | date = | first = | authorlink = |archive-url=|archive-date=|url-status=}}</ref> # Dead, heavy feeling after starting to exercise. # Next day soreness after non-strenuous, everyday activities. # Mentally tired after the slightest effort. # Minimum exercise makes physically tired. # Physically drained or sick after mild activity. To meet criteria for post-exertional malaise, one of these items need to be endorsed at sufficient frequency and severity (2 or greater on a scale of 0-4).<ref name="Cotler2018" /> Although the DSQ has good test-retest reliability and is regarded as a useful tool in making the diagnosis of ME/CFS, its ability to capture PEM accurately has been questioned. Originally these five items formed one of the five subdomains of the ME/CFS Fatigue Types Questionnaire (MFTQ)<ref name="Jason2009">{{Cite journal | last= Jason | first = Leonard | authorlink1=Leonard Jason | last2 = Jessen | first2 = Tricia | last3 = Porter | first3 = Nicole | authorlink3 = Nicole Porter | last4 = Boulton | first4 = Aaron | last5 = Gloria-Njoku | authorlink5 = Mary Gloria Njoku | first5 = Mary | date = 2009-07-16 | title = Examining Types of Fatigue Among Individuals with ME/CFS|url=http://dsq-sds.org/article/view/938|journal=Disability Studies Quarterly|language=en|volume=29|issue=3|doi=10.18061/dsq.v29i3.938|issn=2159-8371}}</ref><ref name="Jason2018perceptions" /> and critics argue that these items are focused too much on fatigue/tiredness to be an adequate measure of PEM. A document formulated by the Science for ME PEM working group to address these issues, explained:<blockquote>"The DSQ PEM items focus largely on feeling fatigue or tiredness, and, apart from one item, do not mention that post-exertional symptoms may be delayed. There is no mention of prolonged recovery or the loss of functional capacity."<ref name="s4me" /></blockquote>The NINDS/CDC common data elements PEM subgroup also noted about the DSQ: <blockquote>"...the instrument does not assess the full range of symptoms that could be exacerbated by PEM and only one item addresses the sometimes delayed onset/ prolonged duration of PEM.<ref name="CDE-PEMAssessment">{{Cite web |url = https://www.commondataelements.ninds.nih.gov/sites/nindscde/files/Doc/MECFS/F2771_Guidance_for_Core_PEM_Assessment.pdf| title = Guidance for Core PEM Assessment|access-date = 2021-02-21 | last = NINDS CDE Project Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Post Exertional Malaise Subgroup}}</ref> </blockquote>In an online poll to which 783 people responded, 68% answered that the DSQ PEM did not reflect their experience of post-exertional malaise<ref name="s4me" />, though questions have been raised about the neutrality of the wording used.<ref name="Jason2018perceptions">{{Cite journal | last= Jason | first = L. A. | last2 = McManimen | first2 = S.L. | last3 = Sunnquist | first3 = M. | last4 = Holtzman | first4 = C.S. | date = 2018-03-21 | title = Patient perceptions of post exertional malaise|url=https://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1453265|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=6|issue=2 | pages = 92–105|doi=10.1080/21641846.2018.1453265|issn=2164-1846}}</ref> In response Jason et al. noted that the DSQ PEM items were developed and selected to screen for the presence of PEM, rather than to comprehensively measure all aspects and variations of PEM. A 2018 analysis, using a large patient sample (n = 704), showed that screening items from the DSQ PEM subscale, were able to identify 97% of patients, which was higher than any other item to describe PEM.<ref name="Jason2018perceptions" /> Furthermore, the authors later revised the DSQ PEM subscale to include new items, some based on [[Melvin Ramsay]]'s writings.<ref name="Cotler2018" /> An extra 5 questions can be used after the initial screening with the DSQ PEM subscale, to better differentiate ME/CFS from other, comparable conditions: # Do you experience a worsening of your fatigue/energy related illness after engaging in minimal physical effort? # Do you experience a worsening of your fatigue/energy related illness after engaging in mental effort? # If you feel worse after activities, how long does this last? # If you were to become exhausted after actively participating in extracurricular activities, sports, or outings with friends, would you recover within an hour or two after the activity ended? # If you do not exercise, is it because exercise makes your symptoms worse? An analysis showed that these questions (the duration of PEM in particular) helped to differentiate ME/CFS patients from controls with [[Multiple sclerosis|MS]] or [[post-polio syndrome]].<ref name="Cotler2018" />
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