References
- Maes M, Anderson G, Morris G, et al. Diagnosis of myalgic encephalomyelitis: where are we now? Expert Opin Med Diagn. 2013;7(3):221–225. doi: https://doi.org/10.1517/17530059.2013.776039
- 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:https://doi.org/10.1111/j.1365-2796.2011.02428.x
- Goudsmit EM, Stouten B, Howes S. Illness intrusiveness in myalgic encephalomyelitis: an exploratory study. J Health Psychol. 2009;14(2):215–221. DOI:https://doi.org/10.1177/1359105308100205. PubMed PMID: MEDLINE:19237488; English.
- van der Werf SP, Prins JB, Vercoulen JH, et al. Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment. J Psychosom Res. 2000;49(5):373–379. PubMed PMID: 11164063; eng. doi: https://doi.org/10.1016/S0022-3999(00)00197-5
- Shepherd C, Chaudri A. ME/CFS/PVFS: an exploration of the key clinical issues. Gawcott: ME Association; 2013
- Nacul LC, Lacerda EM, Campion P, et al. The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. BMC Public Health. 2011;11(1):446. doi: https://doi.org/10.1186/1471-2458-11-402
- Solomon L, Nisenbaum R, Reyes M, et al. Functional status of persons with chronic fatigue syndrome in the Wichita, Kansas, population. Health Qual Life Outcomes. 2003;1:48. DOI:https://doi.org/10.1186/1477-7525-1-48
- Asbring P, Narvanen AL. Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qual Health Res. 2002;12(2):148–160. PubMed PMID: 11837367; eng.
- Green J, Romei J, Natelson BH. Stigma and chronic fatigue syndrome. J Chronic Fatigue Syndrome. 1999;5(2):63–75. doi: https://doi.org/10.1300/J092v05n02_04
- Ware NC. Suffering and the social construction of illness: the delegitimation of illness experience in chronic fatigue syndrome. Med Anthropol Q. 1992;6(4):347–361. doi: https://doi.org/10.1525/maq.1992.6.4.02a00030
- Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol. 2001;27(1):363–385. doi: https://doi.org/10.1146/annurev.soc.27.1.363
- Rao D, Choi SW, Victorson D, et al. Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI). Qual Life Res. 2009;18(5):585–595. DOI:https://doi.org/10.1007/s11136-009-9475-1. PubMed PMID: MEDLINE:19396572.
- Jones EE. Social stigma: the psychology of marked relationships. New York: WH Freeman; 1984
- Rüsch N, Angermeyer MC, Corrigan PW. Mental illness stigma: concepts, consequences, and initiatives to reduce stigma. Eur Psychiatry. 2005;20(8):529–539. doi: https://doi.org/10.1016/j.eurpsy.2005.04.004
- Sirey JA, Bruce ML, Alexopoulos GS, et al. Stigma as a barrier to recovery: perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence. Psychiatric Services. 2001;52(12):1615–1620. DOI:https://doi.org/10.1176/appi.ps.52.12.1615. PubMed PMID: 11726752; eng.
- National Institute of Neurological Disorders and Stroke (NINDS). User manual for the quality of life in neurological disorders (Neuro-QOL) Measures, version 2.0. 2015.
- Dickson A, Knussen C, Flowers P. Stigma and the delegitimation experience: an interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychol Health. 2007;22(7):851–867. PubMed PMID: 2009661242. Language: English. Entry Date: 20080118. Revision Date: 20091218. Publication Type: journal article. doi: https://doi.org/10.1080/14768320600976224
- Ax S, Gregg VH, Jones D. Coping and illness cognitions: chronic fatigue syndrome. Clin Psychol Rev. 2001;21(2):161–182. PubMed PMID: 11293364; eng doi: https://doi.org/10.1016/S0272-7358(99)00031-8
- Mehta N, Clement S, Marcus E, et al. Evidence for effective interventions to reduce mental health-related stigma and discrimination in the medium and long term: systematic review. Br J Psychiatry. 2015;207(5):377–384. doi: https://doi.org/10.1192/bjp.bp.114.151944
- McEvedy CP, Beard AW. Concept of benign myalgic encephalomyelitis. Br Med Journal. 1970;1(5687):11–15. PubMed PMID: 5411596; PubMed Central PMCID: PMCPMC1700895. eng. doi: https://doi.org/10.1136/bmj.1.5687.11
- Parish JG. Early outbreaks of 'epidemic neuromyasthenia'. Postgrad Medical J. 1978;54(637):711–717. PubMed PMID: 370810; PubMed Central PMCID: PMCPMC2425322. eng. doi: https://doi.org/10.1136/pgmj.54.637.711
- Cowley G, Hager M, Nadine J. Chronic fatigue syndrome: a modern medical mystery. Newsweek. 1990 Nov 12.
- Looper KJ, Kirmayer LJ. Perceived stigma in functional somatic syndromes and comparable medical conditions. J Psychosom Res. 2004;57(4):373–378. PubMed PMID: 15518673; eng. doi: https://doi.org/10.1016/S0022-3999(04)00447-7
- Neuro-Qol Technical Report. 2010. Available from: www.neurolqol.org
- Riley WT, Rothrock N, Bruce B, et al. Patient-reported outcomes measurement information system (PROMIS) domain names and definitions revisions: further evaluation of content validity in IRT-derived item banks. Qual Life Res. 2010;19(9):1311–1321. DOI:https://doi.org/10.1007/s11136-010-9694-5. PubMed PMID: 20593306; PubMed Central PMCID: PMCPMC3670674. eng.
- Rothrock NE, Hays RD, Spritzer K, et al. Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS). J Clin Epidemiol. 2010;63(11):1195–1204. DOI:https://doi.org/10.1016/j.jclinepi.2010.04.012. PubMed PMID: 20688471; PubMed Central PMCID: PMCPMC2943571. eng.
- Cook KF, Jensen SE, Schalet BD, et al. PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions. J Clin Epidemiol. 2016;73:89–102. DOI:https://doi.org/10.1016/j.jclinepi.2015.08.038. PubMed PMID: 26952842; PubMed Central PMCID: PMCPMC5131708. eng.
- Hays RD, Bjorner JB, Revicki DA, et al. Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Qual Life Res. 2009;18(7):873–880. DOI:https://doi.org/10.1007/s11136-009-9496-9. PubMed PMID: MEDLINE:19543809; English.
- Carlozzi NE, Victorson D, Sung V, et al. HD-PRO-TRIAD validation: a patient-reported instrument for the symptom triad of huntington's disease. Tremor Other Hyperkinetic Movements. 2014;4:223. DOI:https://doi.org/10.7916/d8pn93nz. PubMed PMID: MEDLINE:24761312; English.
- Victorson D, Cavazos JE, Holmes GL, et al. Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy. Epilepsy Behav. 2014;31:77–84. DOI:https://doi.org/10.1016/j.yebeh.2013.11.008. PubMed PMID: 24361767; PubMed Central PMCID: PMCPMC3970783. eng.
- Weaver KE, Forsythe LP, Reeve BB, et al. Mental and physical health-related quality of life among U.S. cancer survivors: population estimates from the 2010 National Health Interview Survey. Cancer Epidemiol Biomarkers Prev. 2012;21(11):2108–2117. DOI:https://doi.org/10.1158/1055-9965.epi-12-0740. PubMed PMID: 23112268; PubMed Central PMCID: PMCPmc3645867. eng
- National Institute of Neurological Disorders and Stroke (NINDS). User Manual for the Quality of Life in Neurological Disorders (Neuro-QOL) Measures, version 1.0. 2010.
- Kozlowski AJ, Cella D, Nitsch KP, et al. Evaluating individual change with the quality of life in neurological disorders (Neuro-QoL) short forms. Arch Phys Med Rehabil. 2016;97(4):650–654.e8. DOI:https://doi.org/10.1016/j.apmr.2015.12.010. PubMed PMID: 26740062; PubMed Central PMCID: PMCPMC4994512. eng.