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Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness (2015)

Chapter: Appendix D: Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms

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Suggested Citation:"Appendix D: Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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D


Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms1

____________________

1 Further evidence of utility is needed.

Page 270 Cite
Suggested Citation:"Appendix D: Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Symptoms/Manifestations Tools or Questionnaires Access Link
Fatigue The Chalder Fatigue Scalea http://www.goodmedicine.org.uk/files/assessment,%20chalder%20fatigue%20scale.pdf
  Multidimensional Fatigue Inventorya http://www.cdc.gov/cfs/pdf/wichita-data-access/mfi-doc.pdf
  Fisk Fatigue Impact Scalea http://www.actaneurologica.be/acta/download/2003-4/01Kos%20et%20al.pdf
  The Krupp Fatigue Severity Scalea http://www.abiebr.com/set/17-assessment-outcomes-followingacquiredtraumatic-brain-injury/177-fatigue-severity-scale-fss
  Checklist of Individual Strengthb http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1739950/pdf/v057p00353.pdf
  DePaul Symptom Questionnaireb,c http://condor.depaul.edu/ljason/cfs
  CDC Symptom Inventory for CFSb,c http://www.institutferran.org/documentos/cdc_full_symptom_inventory.pdf
  NOVA formd http://www.nova.edu/nim/patients/forms/fatigue-scale.pdf

Substantial decrease or impairment in function: adults

Work and Social Adjustment Scale (WSAS)a

serene.me.uk/tests/wsas.pdf
  Energy Index Point Scorea http://www.treatmentcenterforcfs.com/energy_index_score
  SF-36b (RAND-36 is available as a free version of SF-36) http://www.sf-36.org/tools/pdf/SF-6v1_Standard_Sample.pdf
  The Lawton Instrumental Activities of Daily Living (IADL) Scaled http://consultgerirn.org/uploads/File/trythis/try_this_23.pdf
  Katz Index of Independence in Activities of Daily Livingd http://clas.uiowa.edu/socialwork/files/socialwork/NursingHomeResource/documents/Katz%20ADL_LawtonIADL.pdf
  FIQR (Fibromyalgia Impact Questionnaire Revised)d http://fiqrinfo.ipage.com/FIQR%20FORM.pdf

Substantial decrease or impairment in function: children

Short form of the Child Health Questionnaireb

http://jech.bmj.com/content/59/1/75.full.pdf+html
  Pediatrics Quality of Life Inventory (PedsQL)d http://www.pedsql.org
Page 271 Cite
Suggested Citation:"Appendix D: Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Functional Disability Inventory (FDI)d http://www.commondataelements.ninds.nih.gov/Doc/NOC/Functional_Disability_Inventory_Parent_Form_NOC_Request.pdf

Post-exertional malaise

CDC Symptom Inventory for CFSb,c

http://www.institutferran.org/documentos/cdc_full_symptom_inventory.pdf
  DePaul symptom questionnaireb,c http://condor.depaul.edu/jason/cfs

Sleep problems

Sleep Assessment Questionnaired

http://www.completehealthsleep.com/DesktopModules/DocumentViewer/Documents%5CDocumentId5_%5CSleep%20Assessment%20Questionnaire.pdf
  Pittsburgh Sleep Quality Index (PSQI)d http://consultgerirn.org/uploads/File/trythis/try_this_6_1.pdf
  PROMIS Sleep questionnaired http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3261577/pdf/nihms335121.pdf

Cognitive symptoms

Wood Mental Fatigue Inventorya

http://www.pubfacts.com/detail/7902751/A-brief-mental-fatigue-questionnaire
  Checklist Individual Strength Questionnaireb http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1739950/pdf/v057p00353.pdf
  The Cognitive Failures Questionnaireb http://www.yorku.ca/rokada/psyctest/cogfail.pdf

Orthostatic intolerance

Orthostatic Grading Scaled

http://www.thestudentroom.co.uk/attachment.php?attachmentid=139109&d=1333233284
  COMPASS 31d http://www.nymc.edu/fhp/centers/syncope/COMPASS%2031.pdf
Page 272 Cite
Suggested Citation:"Appendix D: Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Symptoms/Manifestations Tools or Questionnaires Access Link

Pain

PROMISb

http://www.assessmentcenter.net
  SF-36b http://www.sf-36.org/tools/pdf/SF-6v1_Standard_Sample.pdf
  McGill Pain Questionnaired http://www.ama-cmeonline.com/pain_mgmt/pdf/mcgill.pdf
  Brief Pain Inventoryd http://www.npcrc.org/files/news/briefpain_short.pdf
  Pain diagramd http://alaska.providence.org/locations/pvmc/Documents/Pain%20Diagram.pdf

a Questionnaires used or tested in ME/CFS patients that may be useful tools in a clinical setting.

b Questionnaires used or tested in ME/CFS patients that may be difficult to apply in a clinical setting.

c Questionnaires that evaluate the full range of ME/CFS symptomatology (fatigue, decrease in function, post-exertional malaise [PEM], sleep problems, cognitive symptoms, pain).

d Questionnaires not formally tested in ME/CFS patients that may be useful tools in a clinical setting.

Page 269 Cite
Suggested Citation:"Appendix D: Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Page 270 Cite
Suggested Citation:"Appendix D: Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Page 270
Page 271 Cite
Suggested Citation:"Appendix D: Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Page 272 Cite
Suggested Citation:"Appendix D: Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological - rather than psychological - nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness - systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical - not a psychiatric or psychological - illness. This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report's most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.

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