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