Symptom-based survey diagnoses may serve to identify more homogenous sub-groups of fatigue and postviral diseases

References

• Institute of Medicine. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness. Washington (DC): The National Academies Press; 2015. doi:10.17226/19012
   Google Scholar
• Centers for Disease Control and Prevention. Myalgic Encephalomyelitis / Chronic Fatigue Syndrome; 2023. Available from: https://www.cdc.gov/me-cfs/about/index.html.
   Google Scholar
• National Institute for Health and Care Excellence: Guidelines. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. London: National Institute for Health and Care Excellence (NICE); 2021; Available from: www.nice.org.uk/guidance/ng206.
   Google Scholar
• Sharpe MC, Archard LC, Banatvala JE, et al. A report–chronic fatigue syndrome: guidelines for research. J R Soc Med. 1991 Feb;84(2):118–121. doi:10.1177/014107689108400224
   PubMed Web of Science ®Google Scholar
• Fukuda K, Straus SE, Hickie I, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994 Dec 15;121(12):953–959. doi:10.7326/0003-4819-121-12-199412150-00009
   PubMed Web of Science ®Google Scholar
• Carruthers BM, Jain AK, Meirleir D, et al. Myalgic encephalomyelitis/chronic fatigue syndrome. J Chronic Fatigue Syndr. 2003/01/01;11(1):7–115. doi:10.1300/J092v11n01_02
   Google Scholar
• Carruthers BM, van de Sande MI, De Meirleir KL, et al. Myalgic encephalomyelitis: international consensus criteria. J Intern Med 2011;270(4):327–338. doi:10.1111/j.1365-2796.2011.02428.x
   PubMed Web of Science ®Google Scholar
• Montoya JG, et al. Cytokine signature associated with disease severity in chronic fatigue syndrome patients [Research article]. Proc Natl Acad Sci (PNAS). 2017 July 31;114(34):E7150–E7158. doi:10.1073/pnas.1710519114
   PubMed Web of Science ®Google Scholar
• Lien K, Johansen B, Veierød MB, et al. Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome. Physiol Rep. 2019 Jun;7(11):e14138. doi:10.14814/phy2.14138
   PubMed Web of Science ®Google Scholar
• Tomas CEJ, Strassheim V, Newton JL. The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function [Research Article]. PLoS One. 2020 April 10;15(4):e0231136. doi:10.1371/journal.pone.0231136
   PubMed Web of Science ®Google Scholar
• Su J, Thapaliya K, Eaton-Fitch N, et al. Connectivity between salience and default mode networks and subcortical nodes distinguishes between two classes of myalgic encephalomyelitis/chronic fatigue syndrome. Brain Connect. 2023 Apr;13(3):164–173. doi:10.1089/brain.2022.0049
   PubMed Web of Science ®Google Scholar
• Helsedirektoratet. Nasjonal veileder: Pasienter med CFS/ME: Utredning, diagnostikk, behandling, rehabilitering, pleie og omsorg. [National guidelines. Patients with CFS/ME: investigation, diagnostics, treatment, rehabilitation, nursing and care]. Oslo: Helsedirektoratet; 2015; ISBN-nr. 978-82-8081-239-1.
   Google Scholar
• Nacul LC, Lacerda EM, Pheby D, et al. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care. BMC Med. 2011 July 28;9(1):91. doi:10.1186/1741-7015-9-91
   PubMed Web of Science ®Google Scholar
• Nacul L, Lacerda EM, Kingdon CC, et al. How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies? J Health Psychol. 2019;24(12):1765–1769. doi:10.1177/1359105317695803
   PubMed Web of Science ®Google Scholar
• Strand EB, Nacul L, Mengshoel AM, et al. Myalgic encephalomyelitis/chronic fatigue Syndrome (ME/CFS): investigating care practices pointed out to disparities in diagnosis and treatment across European Union. PLoS One. 2019;14(12):e0225995. doi:10.1371/journal.pone.0225995
   PubMed Web of Science ®Google Scholar
• Nacul L, Authier FJ, Scheibenbogen C, et al. European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): expert consensus on the diagnosis, service provision, and care of people with ME/CFS in Europe. Medicina (Kaunas). 2021 May 19;57(5):510. doi:10.3390/medicina57050510
   PubMed Web of Science ®Google Scholar
• Owe JFNH, Gjerde IO, Bødtker JE, et al. Investigation of suspected chronic fatigue syndrome/myalgic encephalopathy [Original article]. Tidsskr Nor Legeforen. 2016 10 Jan 2016;136:227–232. doi:10.4045/tidsskr.15.0229
   PubMedGoogle Scholar
• Cotler J, Holtzman C, Dudun C, et al. A brief questionnaire to assess post-exertional malaise. Diagnostics (Basel). 2018 Sep 11;8(3):66. doi:10.3390/diagnostics8030066
   PubMedGoogle Scholar
• The ME Association. Managing my M.E. What people with ME/CFS and their carers want from the UK’s health and social services. Gawcott: The ME Association; 2010. [Cited 2022 Aug 15] Available from: https://meassociation.org.uk/managing-my-me-me-association-publish-results-of-huge-survey-report/
   Google Scholar
• Bringsli GJ, Gilje A, Wold BKG. ME-syke i Norge - fortsatt bortgjemt? [ME-patients in Norway - still hidden?]. Oslo: Norges ME-forening; 2013; [Cited 2023 Nov 30]. Available from: https://www.me-foreningen.no/wp-content/uploads/2016/09/ME-foreningens-Brukerunders%c3%b8kelse-ME-syke-i-Norge-Fortsatt-bortgjemt-12-mai-2013.pdf.
   Google Scholar
• SurveyMonkey. SurveyMonkey 2023. Available from: https://www.surveymonkey.com/.
   Google Scholar
• Norwegian Agency for Shared Services in Education and Research, SIKT. Notification form for personal data; 2023 [cited 2023]. Available from: https://sikt.no/en/notification-form-personal-data.
   Google Scholar
• Jason LA, Sunnquist M. The development of the Depaul symptom questionnaire: original, expanded, brief, and pediatric versions [Perspective]. Front Pediatr. 2018 Nov 06: 6. 330. doi:10.3389/fped.2018.00330
   PubMed Web of Science ®Google Scholar
• Hays RD, Morales LS. The RAND-36 measure of health-related quality of life. Ann Med 2001 Jan 01;33(5):350–357. doi:10.3109/07853890109002089
   PubMed Web of Science ®Google Scholar
• Jason LA, Holtzman CS, Sunnquist M, et al. The development of an instrument to assess post-exertional malaise in patients with myalgic encephalomyelitis and chronic fatigue syndrome. J Health Psychol. 2021 Feb;26(2):238–248. doi:10.1177/1359105318805819
   PubMed Web of Science ®Google Scholar
• Jason L, Strand E. DePaul Symptom Questionnaire 1 (DSQ-1) Norwegian Translation. 2022.
   Google Scholar
• Norwegian Institute of Public Health.. Norsk versjon av RAND 36-Item short form health survey. Oslo: Norwegian Institute of Public Health; 2023.
   Google Scholar
• Bedree H, Sunnquist M, Jason LA. The DePaul Symptom Questionnaire-2: a validation study. Fatigue. 2019;7(3):166–179. doi:10.1080/21641846.2019.1653471
   PubMedGoogle Scholar
• Jason L. DePaul Symptom Questionnaire (DSQ-2) SPSS Scoring Syntax. Chicago (IL); 2019; [Cited 2022 May 2] Available from: https://csh.depaul.edu/about/centers-and-institutes/ccr/myalgic-encephalomyelitis-cfs/Pages/measures.aspx.
   Google Scholar
• Jason LA, Dorri JA. ME/CFS and post-exertional malaise among patients with long COVID. Neurol Int. 2023;15(1):1–11. doi:10.3390/neurolint15010001
   Web of Science ®Google Scholar
• Sunnquist M, Lazarus S, Jason L. The development of a short form of the DePaul Symptom Questionnaire. Rehabil Psychol. 2019;07/18:64. doi:10.1037/rep0000285
   Google Scholar
• RAND. 36-Item Short Form Survey (SF-36) scoring instructions: RAND; 2023 [cited 2023 December 4, 2023]. Available from: https://www.rand.org/health-care/surveys_tools/mos/36-item-short-form/scoring.html.
   Google Scholar
• Asprusten TT, Sulheim D, Fagermoen E, et al. Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility. BMJ Paediatr Open. 2018;2(1):e000233. doi:10.1136/bmjpo-2017-000233
   PubMedGoogle Scholar
• IBM. IBM SPSS Statistics 28 Command Syntax Reference 2021. Available from: https://www.ibm.com/docs/en/SSLVMB_28.0.0/pdf/IBM_SPSS_Statistics_Command_Syntax_Reference.pdf.
   Google Scholar
• Kielland A, Liu J, Jason LA. Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients in Norway. J Health Psychol. 2023;28(13):1189–1203. doi:10.1177/13591053231169191
   PubMed Web of Science ®Google Scholar
• Modig I. Dette er Norge 2021. [This is Norway 2021] Oslo: Statistics Norway; 2021. ISBN 978-82-587-1367-5.
   Google Scholar
• Bjørkum T, Wang C, Waterloo K. Pasienterfaringer med ulike tiltak ved kronisk utmattelsessyndrom [Patient experiences with various interventions in chronic fatigue syndrome]. Tidsskrift for Den norske legeforening. 2009;129(12):1214–1216. doi:10.4045/tidsskr.09.35791
   PubMedGoogle Scholar
• Asprusten TT, Sletner L, Wyller VB. Are there subgroups of chronic fatigue syndrome? An exploratory cluster analysis of biological markers. J Transl Med. 2021 Jan 30;19(1):48. doi:10.1186/s12967-021-02713-9
   PubMed Web of Science ®Google Scholar
• Schei T, Angelsen A. The course of the illness for ME patients in Norway: what are the typical courses of the illness, and what worsen or improve them? Oslo: The Norwegian ME Association; 2021; [Cited 2023 Nov 30]. Available from: https://www.me-foreningen.no/wp-content/uploads/2021/03/Norwegian-ME-Association-2021-Report-on-the-course-of-illness-English-summary.pdf.
   Google Scholar