The Chronic Fatigue Syndrome Attitudes Test Questions

Measures Developed by the DePaul Research Team

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Measures

DePaul Symptom Questionnaires are below:

These are our questionnaires for measuring symptoms of ME/CFS, ME, and COVID-19. Psychometric properties of our surveys are cited below. All instruments are free to use. If you are considering translating any of our surveys, please let us know as we would be happy to provide you with helpful suggestions.

DePaul Symptom Questionnaire-1 (DSQ-1):

DSQ-1 English Version – PDF

References:

Jason, et al. (2010). The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition

Jason & Sunnquist (2018). The Development of the DePaul Symptom Questionnaire

Scoring:

Case Definition SPSS Scoring Syntax

Case Definition R Scoring Syntax

Translations:

DePaul Symptom Questionnaire-2 (DSQ-2):

DSQ-2 English Version – PDF

Reference:

Bedree, Sunnquist, & Jason (2019). The DePaul Symptom Questionnaire-2: A Validation Study

Scoring:

Case Definition SPSS Scoring Syntax

Translation:

DePaul Symptom Questionnaire – Short Form (DSQ-SF):

DSQ-SF English Version – PDF

Reference:

Sunnquist, Lazarus, & Jason (2019). The Development of a Short Form of the DePaul Symptom Questionnaire

Scoring:

Case Definition SPSS Scoring Syntax

Translations:

Pediatric Questionnaires

DePaul Symptom Questionnaire – Pediatric Screening Questionnaire (DSQ-PSQ):

Pediatric Screening Questionnaire (DSQ-PSQ) - PDF

DePaul Symptom Questionnaire – Pediatric (DSQ-PED):

DSQ-PED (Parent Form)

DSQ-PED (Child Form)

Reference:

Jason, et al. (2020). The Prevalence of Pediatric Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in a Community‑Based Sample

Scoring:

DSQ-PSQ SPSS Scoring Syntax

Translations:

Post-Exertional Malaise:

DePaul Symptom Questionnaire – Post-Exertional Malaise (DSQ-PEM):

DSQ-PEM English Version – PDF & Scoring Guide

Reference:

Cotler et al. (2018). A Brief Questionnaire to Assess Post-Exertional Malaise

DePaul Post-Exertional Malaise Questionnaire (DPEMQ):

DPEMQ – PDF

Reference:

Jason, et al. (2018). The development of an instrument to assess post-exertional malaise in patients with myalgic encephalomyelitis and chronic fatigue syndrome

Translations:

DePaul Symptom Questionnaire - COVID (DSQ-COVID):

DSQ-COVID - PDF

Translations:

German Version - DSQ-COVID

Other Instruments:

Fennell Scale

The Chronic Fatigue Syndrome Attitudes Test Questions

DSQ 1

Conroy, K., Bhatia, S., Islam, M., & Jason, L.A. (2021). Homebound versus bedridden status among patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare, 9(2), 106. PMCID: PMC7909520 https://doi.org/10.3390/healthcare9020106

Kemp, J., Sunnquist, M., Jason, L.A., & Newton, J.L. (2019). Autonomic dysfunction in myalgic encephalomyelitis and chronic fatigue syndrome: Comparing self-report and objective measures. Clinical Autonomic Research, 29(4), 475-477. PMCID: PMC6697554 https://doi.org/10.1007/s10286-019-00615-x

Huber, K., Sunnquist, M., & Jason, L.A. (2018). Latent class analysis of a heterogeneous international sample of patients with myalgic encephalomyelitis/chronic fatigue syndrome. Fatigue: Biomedicine, Health & Behavior, (6)3, 163-178. PMCID: PMC6703845 https://doi.org/10.1080/21641846.2018.1494530

Strand, E.B., Lillestøl, K., Jason, L.A., Tveito, K., Diep, L. M. Valla, S.S., Sunnquist, M., Helland, I.B., Herder, I., & Dammen, T. (2016): Comparing the DePaul Symptom Questionnaire with physician assessments: A preliminary study, Fatigue: Biomedicine, Health & Behavior, 4(1), 52-62. https://doi.org/10.1080/21641846.2015.1126026

Murdock KW, Wang XS, Shi Q, Cleeland CS, Fagundes CP, Vernon SD.(2016) The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome. Qual Life Res, 26, 913–21. doi: 10.1007/s11136-016-1406-3

Jason, L.A., Kot, B., Sunnquist, M., Brown, A., Evans, M., Jantke, R., Williams, Y., Furst, J., & Vernon, S.D. (2015). Chronic fatigue Syndrome and myalgic encephalomyelitis: Toward an empirical case definition. Health Psychology and Behavioral Medicine: An Open Access Journal, 3, 82-93. PMCID: PMC4443921 https://doi.org/10.1080/21642850.2015.1014489

Jason, L.A., Kot, B., Sunnquist, M., Brown, A., Reed, J., Furst, J., Newton, J. L., Strand, E.B., & Vernon, S. D. (2015). Comparing and contrasting consensus versus empirical domains. Fatigue: Biomedicine, Health & Behavior, 3, 63-74. PMCID: PMC4788637 http://doi.org/10.1080/21641846.2015.1017344

Jason, L.A., Sunnquist, M., Brown, A., Newton, J. L., Strand, E. B., & Vernon, S. D. (2015). Chronic fatigue syndrome versus Systemic Exertion Intolerance Disease.Fatigue: Biomedicine, Health & Behavior, 3, 127–141. PMCID:PMC4556426 https://doi.org/10.1080/21641846.2015.1051291

Jason, L.A., So, S., Brown, A.A., Sunnquist, M., & Evans, M. (2015). Test-retest reliability of the DePaul Symptom Questionnaire. Fatigue: Biomedicine, Health & Behavior, 3(1), 16-32. PMCID: PMC4788471 http://doi.org/10.1080/21641846.2014.978110

Jason, L.A., Sunnquist, M., Brown, A., Evans, M., Vernon, S.D., Furst, J., & Simonis, V. (2014). Examining case definition criteria for chronic fatigue syndrome and Myalgic Encephalomyelitis. Fatigue: Biomedicine, Health, and Behavior, 2, 40-56. PMCID: PMC3912876 https://doi.org/10.1080/21641846.2013.862993

Hutchinson, C.V., Maltby, J., Badham, S.P., & Jason, L.A. (2014). Vision-related symptoms as a clinical feature of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis? Evidence from the DePaul Symptom Questionnaire. British Journal of Ophthalmology, 98, 144-145. https://doi.org/10.1136/bjophthalmol-2013-304439

Brown, A.A., & Jason, L.A. (2014). Validating a measure of myalgic encephalomyelitis/chronic fatigue syndrome symptomatology. Fatigue: Biomedicine, Health & Behavior, 2, 132–152. PMCID: PMC4871625 https://doi.org/10.1080/21641846.2014.928014

Jason, L.A., Brown, A., Evans, M., Sunnquist, M., & Newton, J.L. (2013). Contrasting Chronic Fatigue Syndrome versus Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Fatigue: Biomedicine, Health & Behavior, 1, 168–183. PMCID: PMC3728084 https://doi.org/10.1080/21641846.2013.774556

Jason, L.A., Evans, M., Porter, N., Brown, M., Brown, A., Hunnell, J., Anderson, V., Lerch, A., De Meirleir, K., & Friedberg, F. (2010). The development of a revised Canadian Myalgic Encephalomyelitis-Chronic Fatigue Syndrome case definition. American Journal of Biochemistry and Biotechnology, 6(2), 120-135. https://doi.org/10.3844/ajbbsp.2010.120.135

DSQ-2

Bedree, H., Sunnquist, M., & Jason, L.A. (2019). The DePaul Symptom Questionnaire-2: A validation study. Fatigue: Biomedicine, Health & Behavior, 7(3), 166-179. PMCID: PMC7367506 https://doi.org/10.1080/21641846.2019.1653471

Jason, L.A., Ohanian, D., Brown, A., Sunnquist, M., McManimen, S., Klebek, L., Fox, P., & Sorenson, M. (2017). Differentiating Multiple Sclerosis from Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Insights in Biomedicine, 2:11. PMCID: PMC5800741 https://doi.org/10.21767/2572-5610.100011

Ohanian, D., Brown, A., Sunnquist, M., Furst, J., Nicholson, N., Klebek, L., & Jason, L.A. (2016). Identifying key symptoms differentiating Myalgic Encephalomyelitis and Chronic Fatigue Syndrome from Multiple Sclerosis. EC Neurology, 4, 41-45.

DSQ-SF (Short-Form)

Shaheen, N., & Shaheen, A. (2022). Study Protocol Clinical Trial Medicine ® Long-term sequelae of COVID-19 (myalgic encephalomyelitis) An international cross-sectional study. Medicine, 101: e31819. 10.1097/MD.0000000000031819.

Rekeland IG, Sørland K, Bruland O, Risa K, Alme K, Dahl O, et al. (2022) Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients. PLoS ONE 17(9): e0274472. https://doi.org/10.1371/journal.pone.0274472

Jimeno‑Almazán, A., Martínez‑Cava, A., Buendía‑Romero, A., Franco‑López, F., Sánchez‑Agar, J.A., Sánchez‑Alcaraz, B.J., Tufano, J.J., Pallarés, J.G., & Courel‑Ibáñez, J. (2022). Relationship between the severity of persistent symptoms, physical fitness, and cardiopulmonary function in post‑COVID‑19 condition. A population‑based analysis. Internal and Emergency Medicine. https://doi.org/10.1007/s11739-022-03039-0

Froehlich, L., Hattesohl, D.B.R., Cotler, J., Jason, L.A., Scheibenbogen, C., & Behrends, U. (2021b). Causal attributions and perceived stigma for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Journal of Health Psychology. Published online July 9, 2021. https://doi.org/10.1177/13591053211027631

Froehlich, L., Hattesohl, D. B. R., Jason, L. A., Scheibenbogen, C., Behrends, U., & Thoma, M. (2021). Medical care situation of people with Myalgic Encephalomyelitis/Chronic fatigue syndrome in Germany. Medicina, 57(7), 646. https://doi.org/10.3390/medicina57070646

Sunnquist, M., Lazarus, S., & Jason, L. A. (2019). The development of a short form of the DePaul Symptom Questionnaire. Rehabilitation Psychology, 64(4), 453–462. https://doi.org/10.1037/rep0000285

DSQ- PEM

Cotler, J., Katz, B.Z., Reurts-Post, C., Vermeulen, R., & Jason, L.A. (2020). A hierarchical logistic regression predicting rapid respiratory rates from post-exertional malaise. Fatigue: Biomedicine, Health & Behavior, 8(4), 205-213. PMCID: PMC9610439. https://doi.org/10.1080/21641846.2020.1845287

Holtzman, C.S., Fisher, C., Bhatia, S., & Jason, L.A. (2020). Factors affecting the characterization of post-exertional malaise derived from patient input. Journal of Health Disparities Research and Practice, 13(2), 51-64.

Holtzman, C.S., Bhatia^,S., Cotler, J., & Jason, L.A. (2019). Assessment of post-exertional malaise (PEM) in patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A patient-driven survey. Diagnostics, 9(1), 26. PMCID: PMC6468435 https://doi.org/10.3390/diagnostics9010026

McManimen, S. L., Sunnquist, M. L., & Jason, L. A. (2019). Deconstructing post-exertional malaise: An exploratory factor analysis. Journal of Health Psychology, 24(2), 188–198. PMCID: PMC5325824 https://doi.org/10.1177/1359105316664139

Jason, L.A., McManimen, S., Sunnquist, M., & Holtzman, C. (2018). Patient perceptions of post exertional malaise. Fatigue: Biomedicine, Health & Behavior, 6, 92-105. https://doi.org/10.1080/21641846.2018.1453265

Cotler, J., Holtzman, C., Dudun, C., & Jason, L.A. (2018). A brief questionnaire to assess post-exertional malaise. Diagnostics, 8, 66. https://doi.org/10.3390/diagnostics8030066

DSQ- PED

Sorg, A. L., Becht, S., Marietta, J., Armann, J., Both, U. V., Hufnagel, M., Lander, F., Liese, J. G., Niehues, T., Verjans, E., Wetzke, M., Stojanov, S., Behrends, U., Drosten, C., Schroten, H., & Kries, R. V. (2022). Association of SARS-CoV-2 Seropositivity with ME/CFS among children and adolescents in Germany. JAMA Network Open 5(9). doi:10.1001/jamanetworkopen.2022.33454

Ekberg, K., Torres, C., & Jason, L.A. (in press). Parent-child discrepancies in health-related quality of life of children and adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Quality of Life Research. Published online June 30, 2021. https://doi.org/10.1007/s11136-021-02919-w

Jason, L.A., Katz, B.Z., Sunnquist, M., Torres, C., Cotler, J., & Bhatia, S. (2020). The prevalence of pediatric myalgic encephalomyelitis/chronic fatigue syndrome in a community-based sample. Child & Youth Care Forum, 49(4), 563-579. PMCID: PMC8186295 https://doi.org/10.1007/s10566-019-09543-3

Schultz, K.R., Katz, B.Z., Bockian, N.R., & Jason, L.A. (2019). Relationships between autonomic and orthostatic self-report and physician ratings of orthostatic intolerance in youth. Clinical Therapeutics, 41, 633-640. PMCID: PMC6478562 https://doi.org/10.1016/j.clinthera.2019.02.010

Jason LA, Katz BZ, Mears C, Jantke R, Brown A, Sunnquist M, O'Connor K. (2015). Issues in estimating rates of pediatric chronic fatigue syndrome and myalgic encephalomyelitis in a community-based sample. Avicenna J Neuropsychophysiol, 2(4):e37281. doi: 10.17795/ajnpp-37281

Jason, L.A., Porter, N., Shelleby, E.,Till, L., Bell, D.S., Lapp, C.W., Rowe, K., & DeMeirleir, K. (2010). Examining criteria to diagnose ME/CFS in pediatric samples. Journal of Behavioral Health & Medicine, 1(3), 186-195. https://doi.org/10.1037/h0100551

Jason, L.A., Porter, N., Shelleby, E., Till, L., Bell, D.S., Lapp, C.W., Rowe, K., & De Meirleir, K. (2009). Severe versus moderate criteria for the new pediatric case definition for ME/CFS. Child Psychiatry and Human Development, 40, 609–620. PMID: 19513826 https://doi.org/10.1007/s10578-009-0147-8

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DePaul Symptom Questionnaire

DePaul Post-Exertional Malaise Questionnaire

Fennell Scale

The Chronic Fatigue Syndrome Attitudes Test Questions

DePaul Symptom Questionnaire

ID# ____________________ Date_____________________

DePaul Symptom Questionnaire

Please answer the following questions.

1. What is your height?

2. What is your weight?

3. What is your date of birth?

4. What is your gender?

5. To which of the following race(s) do you belong?

 Black, African-American

 White

 American Indian or Alaska Native

 Asian or Pacific Islander

 Other race (Please specify)

6. Are you of Latino or Hispanic origin?

 Yes  No

7. What is your current marital status?

 Married or living with partner

 Separated

 Widowed

 Divorced

 Never married

8. Do you have any children?

 Yes  No (Skip to Question 9)

8a. How many children do you have?

8b. How many of your children are under 18 years old?

9. How many people live in your home?

10. What grade or degree have you completed in school?

 Less than high school

 Some high school

 High school degree or GED

 Partial college (at least one year) or specialized training

 Standard college degree

 Graduate professional degree including masters and doctorate

11. What is your current work status? (Check all that apply)

 On disability

 Student

 Homemaker

 Retired

 Unemployed

 Working part-time

 Working full-time

11a. If you are on disability, for what condition do you receive disability compensation?

Please Specify

12. What is your current occupation?

Current

12a. If you are currently not working, what was your most recent occupation?

Most Recent

For the following questions (13-66), we would like to know how often you have had each symptom and how much each symptom has bothered you over the last 6 months. For each symptom please circle one number for frequency and one number for severity. Please fill the chart out from left to right.

Symptoms	Frequency: Throughout the past 6 months, how often have you had this symptom? For each symptom listed below, circle a number from: 0 = none of the time 1 = a little of the time 2 = about half the time 3 = most of the time 4 = all of the time	Severity: Throughout the past 6 months, how much has this symptom bothered you? For each symptom listed below, circle a number from: 0 = symptom not present 1 = mild 2 = moderate 3 = severe 4 = very severe
13) Fatigue/extreme tiredness	0 1 2 3 4	0 1 2 3 4
14) Dead, heavy feeling after starting to exercise	0 1 2 3 4	0 1 2 3 4
15) Next day soreness or fatigue after non-strenuous, everyday activities	0 1 2 3 4	0 1 2 3 4
16) Mentally tired after the slightest effort	0 1 2 3 4	0 1 2 3 4
17) Minimum exercise makes you physically tired	0 1 2 3 4	0 1 2 3 4
18) Physically drained or sick after mild activity	0 1 2 3 4	0 1 2 3 4
19) Feeling unrefreshed after you wake up in the morning	0 1 2 3 4	0 1 2 3 4
20) Need to nap daily	0 1 2 3 4	0 1 2 3 4
21) Problems falling asleep	0 1 2 3 4	0 1 2 3 4
22) Problems staying asleep	0 1 2 3 4	0 1 2 3 4
23) Waking up early in the morning (e.g. 3am)	0 1 2 3 4	0 1 2 3 4
24) Sleep all day and stay awake all night	0 1 2 3 4	0 1 2 3 4
25) Pain or aching in your muscles	0 1 2 3 4	0 1 2 3 4
26) Pain/stiffness/tenderness in more than one joint without swelling or redness	0 1 2 3 4	0 1 2 3 4
27) Eye pain	0 1 2 3 4	0 1 2 3 4
Symptoms	Frequency: Throughout the past 6 months, how often have you had this symptom? For each symptom listed below, circle a number from: 0 = none of the time 1 = a little of the time 2 = about half the time 3 = most of the time 4 = all of the time	Severity: Throughout the past 6 months, how much has this symptom bothered you? For each symptom listed below, circle a number from: 0 = symptom not present 1 = mild 2 = moderate 3= severe 4 = very severe
28) Chest pain	0 1 2 3 4	0 1 2 3 4
29) Bloating	0 1 2 3 4	0 1 2 3 4
30) Abdomen/stomach pain	0 1 2 3 4	0 1 2 3 4
31) Headaches	0 1 2 3 4	0 1 2 3 4
32) Muscle twitches	0 1 2 3 4	0 1 2 3 4
33) Muscle weakness	0 1 2 3 4	0 1 2 3 4
34) Sensitivity to noise	0 1 2 3 4	0 1 2 3 4
35) Sensitivity to bright lights	0 1 2 3 4	0 1 2 3 4
36) Problems remembering things	0 1 2 3 4	0 1 2 3 4
37) Difficulty paying attention for a long period of time	0 1 2 3 4	0 1 2 3 4
38) Difficulty finding the right word to say or expressing thoughts	0 1 2 3 4	0 1 2 3 4
39) Difficulty understanding things	0 1 2 3 4	0 1 2 3 4
40) Only able to focus on one thing at a time	0 1 2 3 4	0 1 2 3 4
41) Unable to focus vision and/or attention	0 1 2 3 4	0 1 2 3 4
42) Loss of depth perception	0 1 2 3 4	0 1 2 3 4
43) Slowness of thought	0 1 2 3 4	0 1 2 3 4
44) Absent-mindedness or forgetfulness	0 1 2 3 4	0 1 2 3 4
45) Bladder problems	0 1 2 3 4	0 1 2 3 4
46) Irritable bowel problems	0 1 2 3 4	0 1 2 3 4
Symptoms	Frequency: Throughout the past 6 months, how often have you had this symptom? For each symptom listed below, circle a number from: 0 = none of the time 1 = a little of the time 2 = about half the time 3 = most of the time 4 = all of the time	Severity: Throughout the past 6 months, how much has this symptom bothered you? For each symptom listed below, circle a number from: 0 = symptom not present 1 = mild 2 = moderate 3= severe 4 = very severe
47) Nausea	0 1 2 3 4	0 1 2 3 4
48) Feeling unsteady on your feet, like you might fall	0 1 2 3 4	0 1 2 3 4
49) Shortness of breath or trouble catching your breath	0 1 2 3 4	0 1 2 3 4
50) Dizziness or fainting	0 1 2 3 4	0 1 2 3 4
51) Irregular heart beats	0 1 2 3 4	0 1 2 3 4
52) Losing or gaining weight without trying	0 1 2 3 4	0 1 2 3 4
53) No appetite	0 1 2 3 4	0 1 2 3 4
54) Sweating hands	0 1 2 3 4	0 1 2 3 4
55) Night sweats	0 1 2 3 4	0 1 2 3 4
56) Cold limbs (e.g. arms, legs, hands)	0 1 2 3 4	0 1 2 3 4
57) Feeling chills or shivers	0 1 2 3 4	0 1 2 3 4
58) Feeling hot or cold for no reason	0 1 2 3 4	0 1 2 3 4
59) Feeling like you have a high temperature	0 1 2 3 4	0 1 2 3 4
60) Feeling like you have a low temperature	0 1 2 3 4	0 1 2 3 4
61) Alcohol intolerance	0 1 2 3 4	0 1 2 3 4
62) Sore throat	0 1 2 3 4	0 1 2 3 4
63) Tender/sore lymph nodes	0 1 2 3 4	0 1 2 3 4
64) Fever	0 1 2 3 4	0 1 2 3 4
65) Flu-like symptoms	0 1 2 3 4	0 1 2 3 4
66) Some smells, foods, medications, or chemicals make you feel sick	0 1 2 3 4	0 1 2 3 4

67. Have you always had persistent or recurring fatigue/energy problems, even back to your earliest memories as a child? (By persistent or recurring, we mean that the fatigue/energy problems are usually ongoing and constant, but sometimes there are good periods and bad periods.)

 Yes  No  Not having a problem with fatigue/energy

68. Since your fatigue/energy related illness began, do your headaches either happen more often, feel worse or more severe, or are they in a different place or spot?

 Yes  No  Not having a problem with fatigue/energy

69. How long ago did your problem with fatigue/energy begin?

 Less than 6 months

 6-12 months

 1-2 years

 Longer than 2 years

 Had problem with fatigue/energy since childhood or adolescence

 Not having a problem with fatigue/energy

70. Have you been diagnosed with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis?

 Yes  No

70a. If yes, what year were you diagnosed?

70b. Do you currently have a diagnosis of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis?

 Yes  No

70c. Who diagnosed you with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis?

 Medical Doctor  Alternative Practitioner  Self-Diagnosed

70d. Have any of your family members been diagnosed with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis?

 Yes  No

If yes, please list their relation to you and current age

71. Did you experience any of the following symptoms regularly and repeatedly in the months and years before your fatigue/energy problems began?

 Sore throat

 Tender/sore lymph nodes

 Unrefreshing sleep

 Impaired memory and concentration

 Prolonged fatigue following physical or mental exertion

 Muscle pain

 Headaches

 Joint Pain

 Not having a problem with fatigue/energy

72. If you rest, does your problem with fatigue/energy go away? (Check one)

 Entirely

 Partially

 My fatigue/energy problem is not improved by rest (Skip to Question 73)

 I am not having a problem with fatigue/energy (Skip to Question 73)

72a. How long do you have to rest for your problem with fatigue/energy to entirely or partially go away?

 less than 30 minutes  30 to 59 minutes  1-2 hours  more than 2 hours

73. 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?

 Yes  No

74. Do you reduce your activity level to avoid experiencing problems with fatigue/energy?

 Yes  No  Not having a problem with fatigue/energy

75. Do you experience a worsening of your fatigue/energy related illness after engaging in minimal physical effort?

Yes  No  Not having a problem with fatigue/energy

75a. Do you experience a worsening of your fatigue/energy related illness after engaging in mental effort?

 Yes  No

75b. If you feel worse after activities, how long does this last? (Check one)

 1 hour or less  2-3 Hrs  4-10 Hrs  11-13 Hrs

 14-23 Hrs  More than 24 Hrs (Please specify__________)

76. Are you currently engaging in any form of exercise?

 Yes (Skip to Question 77)  No

76a. If you do not exercise, why aren’t you exercising? (Check all boxes that you agree with)

 Not interested

 No time

 Would like to but cannot because of problems with fatigue/energy

 Cannot because exercise makes symptoms worse

77. Over what period of time did your fatigue/energy related illness, develop? (Check one)

 Within 24 hours

 Over 1 week

 Over 1 month

 Over 2-6 months

 Over 7-12 months

 Over 1-2 years

 Over 3 or more years

 I am not ill

78. How would you describe the course of your fatigue/energy related illness? (Check one)

 Constantly getting worse

 Constantly improving

 Persisting (no change)

 Relapsing & remitting (having “good” periods with no symptoms & “bad” periods)

 Fluctuating (symptoms periodically get better and get worse, but never disappear completely)

 No Symptoms/I am not ill

79. Which statement best describes your fatigue/energy related illness during the last 6 months? (Check one)

 I am not able to work or do anything, and I am bedridden.

 I can walk around the house, but I cannot do light housework.

 I can do light housework, but I cannot work part-time.

 I can only work part-time at work or on some family responsibilities.

 I can work full time, but I have no energy left for anything else.

 I can work full time and finish some family responsibilities but I have no energy left

for anything else.

 I can do all work or family responsibilities without any problems with my energy.

80. Did your fatigue/energy related illness start after you experienced any of the following? (Check one or more and please specify)

 An infectious illness

 An accident

 A trip or vacation

 An immunization (shot at doctor’s office)

 Surgery

 Severe stress (bad or unhappy event(s))

 Other

 I am not ill

81. Have you ever consulted a medical doctor or health professional about your fatigue/energy problem?

 Yes  No (Skip to Question 83)

82. Do you currently have a medical doctor overseeing your fatigue/energy problem?

 Yes  No

83. Do you have any medical illness (es) that might be causing your symptoms?

 Yes  No (Skip to Question 84)

83a. What medical illnesses do you have?

Illness name(s) and year it began:

83b. For which of these conditions are you currently receiving treatment?

84. Are you currently taking any medications (over the counter or prescription)?

 Yes  No (Skip to Question 86)

84a. What medications are you taking?

85. Do you think any medication(s) is (are) causing your problem with fatigue/energy?

 Yes  No (Skip to Question 86)

 I do not have a problem with fatigue/energy (Skip to Question 86)

85a. Please specify which medications:

86. Have you ever been diagnosed and/or treated for any of the following: (Check all that apply and write year (s) experienced, years treated, and medication (if applicable) in the blank)

 Major depression

 Major depression with melancholic or psychotic features

 Bipolar disorder (Manic-depression)

 Anxiety

 Schizophrenia

 Eating disorder

 Substance abuse

 Multiple chemical sensitivities

 Fibromyalgia

 Allergies

 Other (Please specify)

 No diagnosis/treatment

87. What do you think is the cause of your problem with fatigue/energy? (Check one)

 Definitely physical

 Mainly physical

 Equally physical and psychological

 Mainly psychological

 Definitely psychological

 No problem with fatigue/energy

88. Do you think anything specific in your personal life or environment accounts for your problem with fatigue/energy?

 Yes  No (Skip to Question 89)

 I do not have a problem with fatigue/energy (Skip to Question 89)

88a. Please specify:

89. In the past 4 weeks, approximately how many hours per week have you spent doing:

Household related activities? hours per week

Social/Recreational related activities? hours per week

Family related activities? hours per week

Work related activities? hours per week

90. In the past 4 weeks, have you had to reduce the number of hours you previously spent (prior to your illness) on occupational, social or family activities because of your health or problems with fatigue/energy?

 Yes  No (Skip to Question 91)  Not having a problem with fatigue/energy

90a. Before your fatigue/energy related illness, approximately how many hours did you used to spend on:

Household related activities? hours per week

Social/Recreational related activities? hours per week

Family related activities? hours per week

Work related activities? hours per week

91. Please rate the amount of energy you had available yesterday, using a scale from 1 to 100 where 1= no energy and 100 = your pre-illness energy level. (If you don't have a fatigue/energy related illness, a score of 100 = having abundant energy such that you could work full time and complete your family responsibilities)

92. Please rate the amount of energy you expended (used) yesterday, using a scale from 1 to 100 where 1 = no energy and 100 = your pre-illness energy expended

93. Please rate the amount of fatigue you had yesterday, using a scale from 1 to 100 where 1 = no fatigue and 100 = severe fatigue

94. For the past week, please rate the amount of energy you had available using a scale from 1 to 100 where 1 = no energy and 100 = your pre-illness energy level

95. For the past week, please rate the amount of energy you have expended (used) using a scale from 1 to 100 where 1 = no energy and 100 = your pre-illness energy expended

96. For the past week, please rate the amount of fatigue you have had using a scale from 1 to 100 where 1 = no fatigue and 100 = severe fatigue

97. Since the onset of your problems with fatigue/energy, have your symptoms caused a 50% or greater reduction in your activity level?

 Yes  No  Not having a problem with fatigue/energy

98. Do you experience frequent viral infections with prolonged recovery periods?

 Yes  No

99. Are you intolerant of extremes of temperatures (when it is extremely hot or cold)?

 Yes  No

MOS SURVEY

INSTRUCTIONS:

This survey asks for your views about your health. This information will help keep track of how you feel and

how well you are able to do your usual activities. Answer every question by marking the answer as

indicated. If you are unsure about how to answer a question, please give the best answer you can.

1. In general, would you say your health is: (Please circle one)

Excellent......................................................................... 1

Very good....................................................................... 2

Good............................................................................... 3

Fair.................................................................................. 4

Poor................................................................................. 5

2. Compared to one year ago, how would you rate your health in general now? (Please circle one)

Much better than one year ago.................................... 1

Somewhat better now than one year ago................... 2

About the same as one year ago................................. 3

Somewhat worse now than one year ago.................. 4

Much worse now than one year ago........................... 5

3. The following items are about activities you might do during a typical day. Does your health now

limit you in these activities? If so, how much?

Activities	Yes, Limited A Lot	Yes, Limited A Little	No, Not Limited At All
Vigorous activities: running, lifting heavy objects, participating in strenuous sports	1	2	3
Moderate activities: moving a table, pushing a vacuum cleaner, bowling, playing golf	1	2	3
Lifting or carrying groceries	1	2	3
Climbing several flights of stairs	1	2	3
Climbing one flight of stairs	1	2	3
Bending, kneeling, or stooping	1	2	3
Walking more than a mile	1	2	3
Walking several blocks	1	2	3
Walking one block	1	2	3
Bathing or dressing yourself	1	2	3

4. During the past 4 weeks, have you had any of the following problems with your work or other

regular daily activities as a result of your physical health?

Problems	Yes	No
Cut down on the amount of time you spent on work or other activities	1	2
Accomplished less than you would like	1	2
Were limited in the kind of work or other activities	1	2
Had difficulty performing the work or other activities (For example, it took extra effort)	1	2

5. During the past 4 weeks, have you had any of the following problems with your work or other

regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?

Problems	Yes	No
Cut down the amount of time you spent on work or other activities	1	2
Accomplished less than you would like	1	2
Didn’t do work or other activities as carefully as usual	1	2

6. During the past 4 weeks, to what extent has your physical health or emotional problems interfered with

your normal social activities with family, neighbors, or groups? (Please circle one)

Not at all......................................................................... 1

Slightly............................................................................ 2

Moderately...................................................................... 3

Quite a bit....................................................................... 4

Extremely........................................................................ 5

7. How much bodily pain have you had during the past 4 weeks?

None............................................................................... 1

Very mild......................................................................... 2

Mild.................................................................................. 3

Moderate........................................................................ 4

Severe............................................................................ 5

Very Severe................................................................... 6

8. During the past 4 weeks, how much did pain interfere with your normal work (including both work

outside the home and housework)?

Not at all......................................................................... 1

Slightly............................................................................ 2

Moderately...................................................................... 3

Quite a bit....................................................................... 4

Extremely........................................................................ 5

9. These questions are about how you feel and how things have been with you during the past 4 weeks.

For each question, please give the one answer that comes closest to the way you have been feeling. How much of the time during the past 4 weeks-

Questions	All of the Time	Most of the Time	A Good Bit of the Time	Some of the Time	A Little of the Time	None of the Time
Did you feel full of pep?	1	2	3	4	5	6
Have you been a nervous person?	1	2	3	4	5	6
Have you felt so down in the dumps that nothing could cheer you up?	1	2	3	4	5	6
Have you felt calm and peaceful?	1	2	3	4	5	6
Did you have a lot of energy?	1	2	3	4	5	6
Have you felt down-hearted and blue?	1	2	3	4	5	6
Did you feel worn out?	1	2	3	4	5	6
Have you been a happy person?	1	2	3	4	5	6
Did you feel tired?	1	2	3	4	5	6

10. During the past 4 weeks, how much of the time has your physical health or

emotional problems interfered with your social activities (like visiting with friends,

relatives, etc.)?

All of the time................................................................. 1

Most of the time............................................................. 2

Some of the time............................................................ 3

A little of the time........................................................... 4

None of the time............................................................ 5

11. How TRUE or FALSE is each of following statements for you?

Statements	Definitely True	Mostly True	Don’t Know	Mostly False	Definitely False
I seem to get sick a little easier than other people	1	2	3	4	5
I am as healthy as anybody I know	1	2	3	4	5
I expect my health to get worse	1	2	3	4	5
My health is excellent	1	2	3	4	5

The DePaul Post-Exertional Malaise Questionnaire (DPEMQ)

Section 1: Demographic and Illness Information

1. What is your age?

(must be over 18 years old)

2. What is your gender?

q Male

q Female

q Other

q Prefer not to answer

3. To which of the following race(s) do you belong?

q Black, African-American

q White

q American Indian or Alaska Native

q Asian or Pacific Islander

4. Other race (Please specify)

5. Are you of Latino or Hispanic origin?

q Yes

q No

6. Do you currently live in the United States?

q Yes

q No

6a. If you do not live in the United States, what country do you currently live in?

________________________________________________________________

7. What is your current marital status?

q Married or living with partner

q Separated

q Widowed

q Divorced

q Never married

q Prefer not to answer

8. What is the highest degree or level of education you have completed?

q Less than high school

q Some high school

q High school degree or GED

q Partial college/university (at least one year) or specialized training

q Standard college/university degree

q Graduate professional degree including masters and doctorate

9. What is your current work status? (Check all that apply)

q On disability

q Student

q Homemaker

q Retired

q Unemployed

q Working part-time

q Working full-time

9a. If you are on disability, for what condition do you receive disability compensation?

Please Specify

10. If you are currently working, what work do you do and what is your job title?

Current

11. If you are currently not working, what was the type of work you did and what was your job title?

Most Recent

12. Prior to leaving the workforce, did you cut back either in number of hours worked or in

work responsibilities?

q Yes

q No

13. What is your current annual income in US dollars?

q Less than $24,999

q $25,000 to $49,999

q $50,000 to $99,999

q $100,000 to $149,999

q $150,000 to $199,999

q $200,000 to $249,999

q $250,000 or more

q Prefer Not to Respond

14. What was your annual income prior to becoming ill in US dollars?

q Less than $24,999

q $25,000 to $49,999

q $50,000 to $99,999

q $100,000 to $149,999

q $150,000 to $199,999

q $200,000 to $249,999

q $250,000 or more

q Prefer Not to Respond

15. What have you been diagnosed with?

q Chronic Fatigue Syndrome (CFS)

q Myalgic Encephalomyelitis (ME)

16. Other (please specify) ______________

17. If you have a diagnosis, what year were you diagnosed?

18. What age were you when you were diagnosed? _______________

19. Who diagnosed you?

q Medical Doctor

q Alternative Practitioner

q Self-Diagnosed

19a. If you were diagnosed by a medical doctor, was he/she an expert/knowledgeable of ME or CFS?

q Yes

q No

20. How long ago did your problem with ME or CFS begin?

q Less than 6 months

q 6-11 months

q 1-2 years

q 3-5 years

q 6-10 years

q Over 10 years

q Had problem with ME or CFS since childhood or adolescence

q Not having a problem with ME or CFS

21. Has your ME or CFS illness been present for more than 50% of the time since you became ill?

q Yes

q No

22. How would you describe the course of your ME or CFS illness? (Check one)

q Constantly getting worse

q Constantly improving

q Persisting (no change)

q Relapsing & remitting (having “good” periods with no symptoms & “bad” periods)

q Fluctuating (symptoms periodically get better and get worse, but never disappear completely)

q No Symptoms/I am not ill.

23. Which statement best describes your ME or CFS illness during the last 6 months? (Check one)

q I am not able to work or do anything, and I am bedridden/completely incapacitated.

q I can walk around the house, but I cannot do light housework.

q I can do light housework, but I cannot work part-time.

q I can only work part-time at work or on some family responsibilities.

q I can work full time, but I have no energy left for anything else.

q I can work full time and finish some family responsibilities but I have no energy left for anything else.

q I can do all work or family responsibilities without any problems with my energy.

Section 2: Onset and Triggers

24. Is the onset of your symptom exacerbation ever immediately after exertion?

q Yes

q No

24a.If you answered yes, do you experience immediate symptom exacerbation after exertion:

q All of the time

q Most of the time

q About half the time

q A little of the time

24b. If your onset is immediate, please indicate after what activities:

_______________________________________________________________

24c. If your onset is immediate, please indicate for which symptoms:

_____________________________________________________________

25. Is the onset of your symptom exacerbation ever delayed after exertion?

q Yes

q No

25a.If you answered yes, do you experience immediate symptom exacerbation after exertion:

q All of the time

q Most of the time

q About half the time

q A little of the time

25b. If your onset is delayed, indicate how long after the exertion does your symptom exacerbation occur (you may check more than one box):

q 1 hour or less

q 2-6 hrs

q 7-12 hrs

q 13-24 hrs

q 1-2 days

q 3-4 days

q 5-6 days

q More than 1 week

25c. If your onset is delayed, please indicate after what activities:

_______________________________________________________________

25d. If your onset is delayed, please indicate for which symptoms:

_____________________________________________________________

26. Do basic activities of daily living like going to the toilet, bathing, dressing, communicating, and/or reading trigger your symptom exacerbation?

q Yes

q No

26a. If you answered yes, do you experience the worsening of symptoms after exertion:

q All of the time

q Most of the time

q About half the time

q A little of the time

27. Do positional changes (e.g., your body position is shifted from the lying down to standing) lead to symptom exacerbation?

q Yes

q No

27a. If you answered yes, do you experience the worsening of symptoms after exertion:

q All of the time

q Most of the time

q About half the time

q A little of the time

28. Does emotional stress (good or bad) lead to symptom exacerbation?

q Yes

q No

26a. If you answered yes, do you experience the worsening of symptoms after exertion:

q All of the time

q Most of the time

q About half the time

q A little of the time

29. Are there some instances in which the specific precipitants of your symptom exacerbation cannot be identified?

q Yes

q No

30. On a day you are recovering from symptom exacerbation, does it take less exposure that usual to a trigger to exacerbate your symptoms?

q Yes

q No

31. If you have mild overexertion over several days, can this also produce an abnormal physical or cognitive response?

q Yes

q No

32. Do you have other triggers that provoke symptom exacerbation such as (check box if yes):

q Chemicals

q Foods

q Light

q Heat

q Cold

q Noise

q Visual overload

q Watching movement (such as a video)

q Sensory overload

Section 3: Consequences and Symptoms

33. If you go beyond your energy limits by engaging in pre-illness tolerated exercise or activities of daily living, do you experience any of the following (check box if yes):

q An abnormal response to minimal amounts of physical and/or cognitive exertion

q An onset that is immediate or delayed by hours or days

q A severity and duration of symptoms that are out of proportion to the initial trigger

q A loss of functional capacity and/or stamina

q Post-exertional exhaustion

q Symptom exacerbation

Section 4: In the next set of questions, indicate whether or not the following symptoms made worse due to physical or cognitive exertion (which we will refer to as “symptom exacerbation”):

Symptoms	Frequency: Throughout the past 6 months, how often have you had this symptom? For each symptom listed below, circle a number from: 0 = none of the time 1 = a little of the time 2 = about half the time 3 = most of the time 4 = all of the time	Severity: Throughout the past 6 months, how much has this symptom bothered you? For each symptom listed below, circle a number from: 0 = symptom not present 1 = mild 2 = moderate 3 = severe 4= very severe
34. Reduced stamina and/or functional capacity	0 1 2 3 4	0 1 2 3 4
35. Physically fatigued while mentally wired	0 1 2 3 4	0 1 2 3 4
36. Cognitive exhaustion	0 1 2 3 4	0 1 2 3 4
37. Problems thinking	0 1 2 3 4	0 1 2 3 4
38. Unrefreshing sleep	0 1 2 3 4	0 1 2 3 4
39. Insomnia	0 1 2 3 4	0 1 2 3 4
40. Muscle pain	0 1 2 3 4	0 1 2 3 4
41. Muscle weakness/instability	0 1 2 3 4	0 1 2 3 4
42. Aches all over your body	0 1 2 3 4	0 1 2 3 4
43. Dizziness	0 1 2 3 4	0 1 2 3 4
44. Flu-like symptoms	0 1 2 3 4	0 1 2 3 4
45. Temperature dysregulation	0 1 2 3 4	0 1 2 3 4

46. Please list any other PEM symptoms you experience:

______________________________________________________________________________

Section 5: Duration, Recovery, and Pacing

47. Does your prolonged, unpredictable recovery period from symptom exacerbation last days, weeks, or even months?

q Yes

q No

47a. If yes, how long does your prolonged, unpredictable recovery period typically last (you may check more than one box):

q Within 24 hours

q Between 24 hours and 1 week

q Between 1 week and 1 month

q Between 1 month and 6 months

q Between 6 months and 12 months

q Between 12 months and 2 years

q Over 2 years

48. Is the severity and duration of your symptom exacerbation out-of-proportion to the type of the exertion?

q Yes

q No

48a. If you answered yes, do you experience the worsening of symptoms after exertion:

q All of the time

q Most of the time

q About half the time

q A little of the time

49. Is the severity and duration of your symptom exacerbation symptoms out-of-proportion to the intensity of the exertion?

q Yes

q No

49a. If you answered yes, do you experience the worsening of symptoms after exertion:

q All of the time

q Most of the time

q About half the time

q A little of the time

50. Is the severity and duration of your symptom exacerbation out-of-proportion to the frequency of the exertion?

q Yes

q No

50a. If you answered yes, do you experience the worsening of symptoms after exertion:

q All of the time

q Most of the time

q About half the time

q A little of the time

51. Is the severity and duration of your symptom exacerbation out-of-proportion to the duration of the exertion?

q Yes

q No

51a. If you answered yes, do you experience the worsening of symptoms after exertion:

q All of the time

q Most of the time

q About half the time

q A little of the time

52. Does pacing allow you to completely avoid your symptom exacerbation?

q Yes

q No

53. Does pacing allow you to avoid only to a certain degree your symptom exacerbation?

q Yes

q No

53a. If yes, how frequently do you find pacing to be effective in avoiding symptom exacerbation?

q All of the time

q Most of the time

q About half the time

q A little of the time

53b. If yes, how effectively do you find pacing to be in reducing the level of severity of your symptoms?

q Very effective

q Moderately effective

q Mildly effective

q Barely effective

______________________________________________________________________________
Fennell Scale
(Jason, Fennell, Klein, Fricano, Halpert, & Taylor, 1999)

Rate each of the items below on a five point scale
1= definitely do not agree
2=do not agree
3=somewhat agree
4=agree
5=very strongly agree

___1.    I feel like I am falling apart.^a
___2.    I am just beginning to recognize when and how my symptoms occur.^b
___3.    I am beginning to accept the fact that I will never be completely like I was before the illness and that I will need to become a new person.^b
___4.    I now have learned that living with the illness involves getting sicker, at times, and improving, at times.^c
___5.    The primary way for me to improve is if my physician finds me the right treatment.^a
___6.    I am beginning to seek support and information from others who have or who know about the illness.^b
___7.    I am in the early process of creating meaning about my illness experience.^b
___8.    I have gained a sense of myself that is blended - a combination of my life before and after I first got sick.^c
___9.    I need to know with certainty when and if I am going to get better.^a
___10. I am just starting to feel like I have some control of my life.^b
___11. I am beginning to learn how to live with the unknown or chronic nature of my illness.^b
___12. I have better and more satisfying relationships with people I care about since I first became sick.^d
___13. It is my fault I got sick.^d
___14. I am just starting to realize that there may be things I can do to help myself feel better.^b
___15. I am starting to see my illness experience as having some value.^b
___16. I am proud of myself for living with this illness.^c
___17. I think about my illness all of the time.^a
___18. I am just beginning to stabilize (i.e., feeling a bit less confused and a bit more ordered).^b
___19. For the first time, I am beginning to have compassion and love for myself and for what I have endured.^b
___20. I am a better and wiser person since I first got sick.^c

a = Crisis Factor
b = Stabilization Factor
c = Integration Factor
d = Item did not significantly load

The Crisis mean score was calculated by adding items 1, 5, 9, and 17 of the Fennell Phase Inventory and dividing by four. The Stabilization mean score was calculated by adding items 2, 3, 6, 7, 10, 11, 14, 15, 18, and 19 of the Fennell Phase Inventory and dividing by ten. The Integration mean score was calculated by adding items 4, 8, 16, and 20 of the Fennell Phase Inventory and dividing by four.

These scoring criteria are in Jason, Fricano, Taylor, Halpert, Fennell, Klein, and Levine (in press). Using Crisis, Stabilization, and Integration mean scores (see above), each participant was then assigned to one of the four groups according to the following algorithmic criteria derived from the cluster analysis from the data in the Jason, Fennell, Klein, Fricano, Halpert, and Taylor (1999) study. Criteria for the Crisis group were a Crisis score of 3.00 or above and Stabilization and Integration scores of 3.30 or below. Criteria for the Integration group were a Crisis score of 2.50 or below, a Stabilization score of 2.80 or below and an Integration score of 4.25 or above. Cases not in either of these groups that had either a Crisis score 3.10 or above, a Stabilization score 3.40 or above, or an Integration score of 3.75 or above were classified into a Resolution group. Cases that did not meet any of the above criteria comprised the Stabilization group.

The Chronic Fatigue Syndrome Attitudes Test Questions
(Schlaes, Jason, & Ferrari, 1999)

1.) Children with CFS should be allowed to attend regular classes

2.) Employers should be permitted to fire those with CFS.

3.) People with CFS are just depressed.

4.) More federal funds should be allocated for research on CFS

5.) People with CFS are lazy.

6.) I would continue to visit and support a friend who had CFS.

7.) People with CFS should not be discriminated against in any way.

8.) CFS is not a real medical illness.

9.) I would shake hands with someone with CFS.

10.) The majority of people with CFS were competitive, driven to achieve, and compulsive before they got sick.

11.) I would not sit on the same toilet that a person with CFS had just used.

12.) CFS is not as big a problem as the media suggests.

13.) People with CFS would get better if they really wanted to be healthy.

14.) CFS is primarily a psychological disorder.

15.) The majority of people with CFS have a high socio-economic status.

16.) CFS is one of the leading medical problems in the country.

17.) If people with CFS rest then they will get better.

18.) People with CFS are to blame for getting sick.

19.) CFS is a form of punishment from GOD.

Each item is scored on a 7 point scale from strongly disagree (1) to strongly agree (7).
For scoring purposes, use only items 2,3,4,5,8,10,11,12,13,14,17,18, and 19 (reverse score item 4).
You can sum these items for an overall composite score and also add up the items below to use the following three factor scores:
Responsibility for CFS: items 3,5,11,18,19.
Relevance of CFS: items 2,4,8,12.
Traits of people with CFS: items 10,13,14,17.