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F r e q u e n t l y A s k e d q u e s t i o n s

U.S. Department of Health and Human Services, Office on Women’s Health

http://www.womenshealth.gov

1-800-994-9662

TDD: 1-888-220-5446

Chronic Fatigue SyndromeQ: What is Chronic Fatigue

Syndrome (CFS)?A: ApersonwithCFSfeelscompletely

worn-outandovertired.Thisextremetirednessmakesithardtodothedailytasksthatmostofusdowithoutthink-ing—likedressing,bathing,oreating.Sleeporrestdoesnotmakethetired-nessgoaway.Itcanbemadeworsebymoving,exercising,oreventhinking.

CFScanhappenovertimeorcomeonsuddenly.PeoplewhogetCFSovertimegetmoreandmoretiredoverweeksormonths.PeoplewhogetCFSsuddenlyfeelfineonedayandthenfeelextremelytiredthenext.Aper-sonwithCFSmayhavemusclepain,troublefocusing,orinsomnia(notbeingabletosleep).Theextremetired-nessmaycomeandgo.Insomecasestheextremetirednessnevergoesaway.Theextremetirednessmustgoonforatleast6monthsbeforeadiagnosisofCFScanbemade.

CFSissometimescalledchronicfatigueandimmunedysfunctionsyndrome(CFIDS).Itisalsosometimescalledmyalgicencephalomyelitis(mye-AL-jiken-SEFF-ah-loh-mye-LYE-tiss),orME.

Q: What causes CFS?A: Nooneknowsforsurewhatcauses

CFS.ManypeoplewithCFSsayitstartedafteraninfection,suchasacoldorstomachbug.Italsocanfol-lowinfectionwiththeEpstein-Barrvirus.Thisisthesamevirusthatcausesinfectiousmononucleosis(sometimescalled“mono”).SomepeoplewithCFSsayitstartedafteratimeofgreatstress,suchasthelossofalovedoneormajorsurgery.

ItcanbehardtofigureoutifapersonhasCFSbecauseextremetirednessisacommonsymptomofmanyillnesses.Also,somemedicaltreatments,suchaschemotherapy,cancauseextremetiredness.

Q: What are the signs of CFS?A: ThesignsofCFScancomeandgoor

theycanstaywithaperson.Atfirst,youmayfeellikeyouhavethef lu.Aswellasextremetirednessandweakness,mainCFSsymptomsinclude:

• Feelingverytiredformorethanaday(24hours)afterphysicalormen-talexercise

• Forgettingthingsorhavingahardtimefocusing

• Feelingtiredevenaftersleeping

• Musclepainoraches

• Painorachesinjointswithoutswellingorredness

• Headachesofanewtype,pattern,orstrength

• Tenderlymphnodesintheneckorunderthearm

• Sorethroat

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F r e q u e n t l y A s k e d q u e s t i o n s

U.S. Department of Health and Human Services, Office on Women’s Health

http://www.womenshealth.gov

1-800-994-9662

TDD: 1-888-220-5446

ThesymptomsabovearethemainsignsofCFS.CFSsymptomsmayalsoinclude:

• Visualdisturbances(blurring,sensi-tivitytolight,eyepain)

• Psychologicalsymptoms(irritability,moodswings,panicattacks,anxiety)

• Chillsandnightsweats

• Lowgradefeverorlowbodytem-perature

• Irritablebowel

• Allergiesandsensitivitiestofoods,odors,chemicals,medications,andnoise/sound

• Numbness,tingling,orburningsen-sationsintheface,hands,orfeet

• Difficultysittingorstandingstraightup,dizziness,balanceproblems,andfainting

SymptomsofCFSvarywidelyfrompersontopersonandmaybeseriousormild.Mostsymptomscannotbeseenbyothers,whichmakesithardforfriends,familymembers,andthepublictounderstandthechallengesapersonwithCFSfaces.IfyouthinkyoumayhaveCFS,talktoyourdoctor.

Q: How common is CFS? Who gets it?

A: ExpertsthinkatleastonemillionAmericanshaveCFS.Fewerthan20percentofthesecaseshavebeendiag-nosed,however.

WomenarefourtimesaslikelyasmentodevelopCFS.Theillnessoccursmostofteninpeopleages40–59.Still,peopleofallagescangetCFS.CFSislesscommoninchildrenthaninadults.StudiessuggestthatCFSoccursmoreofteninadolescentsthaninchildrenundertheageof12.

CFSoccursinallethnicgroupsandraces,andincountriesaroundtheworld.PeopleofallincomelevelscandevelopCFS,althoughthereisevi-dencethatitismorecommoninlower-incomethaninhigher-incomepersons.CFSissometimesseeninmembersofthesamefamily,butthereisnoevi-dencethatitiscontagious.Instead,itmayruninfamiliesbecauseofageneticlink.Furtherresearchisneededtoexplorehowthishappens.

Q: How would my doctor know if I have CFS?

A: Itcanbehardforyourdoctortodiag-noseCFSbecausethereisnolabtestforit.Also,manysignsofCFSarealsosignsofotherillnessesorsideeffectsofmedicaltreatments.Allcasesarediag-nosedbythe1994CentersforDiseaseControl(CDC)definition,whichisalsosometimescalledthe“Fukudacriteria”afterthenameofaleadingresearcherinthefield.ChildrenwithCFScanbediagnosedbyanewpediat-riccasedefinition,whichdiffersfromtheadultdefinition.

IfyouthinkyoumayhaveCFS,seeyourdoctor.Yourdoctorwill:

• Askyouaboutyourphysicalandmentalhealth.

• Doaphysicalexam.

• Orderurineandbloodtests,whichwilltellyourdoctorifsomethingotherthanCFSmightbecausingyoursymptoms.

• Ordermoretests,ifyoururineandbloodtestsdonotshowacauseforyoursymptoms.

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F r e q u e n t l y A s k e d q u e s t i o n s

U.S. Department of Health and Human Services, Office on Women’s Health

http://www.womenshealth.gov

1-800-994-9662

TDD: 1-888-220-5446

• ClassifyyouashavingCFSif:

1. Youhavebeenextremelytiredfor6monthsormoreandtestsdonotshowacauseforyoursymptoms

AND

2. Youhave4ormoreofthesymp-tomslistedinthesection“WhatarethesignsofCFS?”inthisFAQ.

Thisprocesscantakealongtime(evenyears),sotrytobepatientwithyourdoctor.Whilethesetestsarebeingdone,talktoyourdoctoraboutwaystohelpeaseyoursymptoms.AlthoughCFSisnotaformofdepression,manypatientsdevelopdepressionasaresultwithdealingwithalong-termillness.

Q: How is CFS treated?A: Rightnow,thereisnocureforCFS.

Buttherearethingsyoucandotofeelbetter.Talktoyourdoctoraboutwaystoeaseyoursymptomsanddealwithyourtiredness.Youmightalsotrythese:

Lifestyle changes:

• Trytostopordolessofthethingsthatseemtotriggeryourtiredness.Foraweekortwowritedownwhatyoudoeachday.Notewhenyoufeelreallytired.Then,lookoverthislisttofindoutwhichactivitiestendtotireyouout.Anoccupationaltherapistcanhelpyoubylookingatyourdailyhabitsandsuggestingchangestohelpyousaveenergy.Yourdoctorcanhelpyoufindanoccupationaltherapistnearwhereyoulive.

• Attheendoftheday,trythink-ingabouthowmuchenergyyou

thinkyouhadthatday,andhowmuchenergyyouactuallyusedthatday.Ifyoukeepthesetwoamountsofenergysimilarovertime,youmayslowlygainmorestrengthandenergy.Thinkaboutwhichactivi-tiesaremostimportanttoyou,andwhichactivitiesyoudonotneedtodoasoften.Makesuretotellotherpeopleinyourlifehowmuchenergyyoucanactuallyuseeachday.Theycanhelpmakesureyoudon’tdotoomuch.Itisimportanttorememberthatenergycanmeanmental,emo-tional,orphysicalenergy.

Medications:

• Over-the-counterpainrelieverssuchasAdvil,Motrin,orAlevecanhelpwithbodyaches,headaches,andmuscleandjointpain.

• Nondrowsyantihistamines(an-tee-HISS-tah-meens)canhelpwithallergysymptoms,suchasrunnynoseanditchyeyes.

• Prescriptionmedicationslikedox-epin(DOCKS-ih-pin)oramitripty-line(am-ih-TRIP-tah-leen)canhelpimprovesleep.

SomepeoplesaytheirCFSsymptomsgetbetterwithcomplementaryoralternativetreatments,suchasmassage,acupuncture,chiropracticcare,yoga,stretching,orself-hypnosis.Keepinmindthatmanyalternativetreatments,dietarysupplements,andherbalrem-ediesclaimtocureCFS,buttheymightdomoreharmthangood.Talktoyourdoctorbeforeseeingsomeoneelsefortreatmentorbeforetryingalternativetherapies.

Also,keepinmindthatyourdoctormayneedtolearnmoreaboutCFStobetterhelpyou.Ifyoufeelyourdoctor

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F r e q u e n t l y A s k e d q u e s t i o n s

U.S. Department of Health and Human Services, Office on Women’s Health

http://www.womenshealth.gov

1-800-994-9662

TDD: 1-888-220-5446

doesn’tknowalotaboutCFSorhasdoubtsaboutitbeinga“real”illness,seeanotherdoctorforasecondopin-ion.Contactalocaluniversitymedicalschoolorresearchcenterforhelpfind-ingadoctorwhotreatspeoplewithCFS.

Q: What can I do to cope with CFS?

A: It’snormaltofeelcranky,sad,angry,orupsetwhenyouhaveanillnesslikeCFS.Somethingsthatmighthelpyoutofeelbetterinclude:

• Seethe"Formoreinformation"sec-tionattheendofthisFAQforalistoforganizationsthatcanhelpyoucopewithCFS.

• Considertalktherapytohelpyoulearnhowtodealwithyourfeelings.

• JoinaCFSsupportgroup.Sometimesithelpstotalkwithpeo-plewhoaregoingthroughthesamething.Seethe"Formoreinforma-tion"sectionattheendofthisFAQforalistoforganizationsthatcanhelpyoufindCFSsupportgroups.

Q: What if I can't work because of CFS?

A: Ifyoucan’tworkbecauseofCFS,getintouchwiththeSocialSecurityAdministrationforhelpwithdisabil-itybenefits.Itcanbehardtogetthesebenefitsonyourown.Workingwithalawyerwhospecializesindisabilityben-efitscouldmakethisprocesseasier.

Social Security Administration PhoneNumber:(800)772-1213(tollfree)InternetAddress:http://www.ssa.gov

Q: What is the latest research on CFS?

A: BoththeNationalInstitutesofHealth(NIH)andtheCentersforDiseaseControlandPrevention(CDC)fundCFSstudies.Today,wehaveamuchbetterunderstandingofCFS,butresearchersarestillsearchingforthecause(s).TheyalsoarelookingforwaystopreventCFSandforthebestwaystoeaseCFSsymptoms.Intime,researchfindingswillbeusedtodevelopacureforCFS.n

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For more informationFormoreinformationonchronicfatiguesyndrome,callwomenshealth.govat1-800-994-9662orcontactthefollowingorganizations:

Centers for Disease Control and Prevention (CDC) 24-Hour Chronic Fatigue Syndrome Voice Information SystemInternetAddress:http://www.cdc.gov/cfs/

Chronic Fatigue Syndrome Advisory Committee (CFSAC)PhoneNumber:(202)690-7650InternetAddress:http://www.hhs.gov/adv-comcfs

Chronic Fatigue and Immune Dysfunction Syndrome Association of AmericaPhoneNumber:(704)365-2343InternetAddress:http://www.cfids.org

National CFIDS FoundationPhoneNumber:(781)449-3535InternetAddress:http://www.ncf-net.org

The Trans-NIH Working Group on Chronic Fatigue SyndromePhoneNumber:(301)402-1770InternetAddress:http://orwh.od.nih.gov/cfs.html

International Association for CFS/MEPhoneNumber:(847)258-7248InternetAddress:http://www.iacfsme.org/

National Chronic Fatigue Syndrome and Fibromyalgia AssociationPhoneNumber:(816)737-1343InternetAddress:http://www.ncfsfa.org/

AllmaterialcontainedinthisFAQisfreeofcopyrightrestrictions,andmaybecopied,reproduced,orduplicatedwithoutpermissionoftheOfficeonWomen'sHealthintheDepartmentofHealthandHumanServices.Citationofthesourceisappreciated.

ThisFAQwasreviewedby:LeonardA.Jason,Ph.D.

ContentlastupdatedSeptember22,2009.

U.S. Department of Health and Human Services, Office on Women’s Health

http://www.womenshealth.gov

1-800-994-9662

TDD: 1-888-220-5446