missing since childhoody9ukb3xpraw1vtswp2e7ia6u-wpengine.netdna-ssl.com/wp...the black dnr bracelet...

#MillionsMissing

Missingsincechildhood:Sarah|Germany

“MynameisSarah.Iam42yearsoldliveinsouthernGermany.IhavebeensufferingwithME

sinceIwasasmallchild.

Duringthelast10yearsmyMEhasbeengettingworseandIhavedeterioratedfurther.

I'mforcedtorestinbedfor23hourseachday.

Iseemysononlyafewminutesaday.”

#MillionsMissing

Missingsince1987:KarenC.|Sacramento

“Mycareerwasjustgettingstarted‐‐I'dbeenofferedmyfirstpoliticalappointment‐‐andhadtoturnitdownbecauseofmyhealth.February1987…

I'vealreadybeensickmorethanhalfmylife.

Inafewmonthsit'llbe30years.

Andstillnotreatment,nocure,becauseofpolitics.”

#MillionsMissing

Missingsince2015:Lizzie|Chicago

“IamLizzie.Iloveallkindsofsports.Iplayedbasketball,softballandsoccer.IreallylovetheBears.Iwasthefastestgirlinmy4thgradeclassforthemilerun.Iamareallygoodstudent.Theseareallthingsstillpartofme.ButnowIhaveMEandIcan'tdoanythingIoncedid.Ican’tgotoschoolformorethan

anhour,myheadexplodeswithpain.Ihurtalllllthetime.ImissseeingmyfriendsbutIgettootired–Iwouldrathernotseethem.

Now,Ispendalotoftimedoingcraftsandinmybed.Ididthiscardboardboatracewithmysisterafewweeksago.Afterwefinishedtherace(wedidn'tsink!),Iwasinbedfor4daysexhaustedandwithahuge

headacheandstingingears.Butitwasfunandworththeefforttorecover.”

#MillionsMissing

Missingsince2000:LoriB.

“ThisWASme,asuccessfulexecutive,trainingforamarathon,andwithaveryactivesociallife.IwasALWAYSonthegoandworkedmanylonghourstogetaheadinmycareer…andIlovedit.

OnemorningIwokeup,wenttogetup,andcouldn'tstandup.Thatwasthestartofanongoing16‐yearbattlewithCFS/ME.Abrickwallstoppedmefromrunningand

exercising.Iwasfinallydiagnosedin2004afterbeingtoldmysymptomswereallinmyhead,andthatIjustneededantidepressantmedicine.Myneurologicalsymptomsworsenednoticeablyin2008,andby2010,IhadtogiveupmylifeasIonceknewit.Ihavelostmycareer,sociallifeandfriends.Ispendmostofmywakinghoursrestingorlayingdown.Ihavehadmanyoftheneurologicalcomponentsofthedisease(includingPOTSandseizures)andhavenotfoundaneurologistwhobelievesinME.Peoplewillsaytome,‘wellyoulookfine’,whichdrivesmefurtherintoseclusion....”

#MillionsMissing

Missingsince2013:JamieD.|California

“I am 26 and have been sick for two-and-a-half years too long. I was graduating from college, working full-time, when I started to lose weight, get profoundly fatigued and cognitively impaired after mold exposure and two back-to-back viruses. I was a surfer with a knack for psychology, concerts, dancing, and so much more. I always loved science and healthcare. Since my diagnosis, I have lost friends, family, jobs, school, and dreams. The unknowingness is the worst. Having ME means never knowing how I will feel minute to minute, whether I will be left bedridden again, and if so, for how long this time? How much money I will spend on treatment… will I be left homeless and unable to take care of myself again? Will there ever be a cure? I fight tooth and nail every day to hold onto hope that I will one day live the life I deserve to – along with the millions of other people who have ME.”

#MillionsMissing

Missingsince1992:HeatherE.

“IamaSpanishtranslator,substituteteacher,andChristiancounselor.IhavehadME/CFSfor24years.

BeforeIgotterriblysick,Ididalotoftraveling.

Icurrentlyamalmostentirelyhomebound.Icanonly

translateonline.Iamnotabletotakeonmanycounselingclientsduetomysymptoms.

HerearepicturesfrombeforeandafterIgotsick.

Pleasecontinuetoresearchthisillnessasmanyofusare

sufferinghorribly.”

#MillionsMissing

Missingsince 2014:Shar|Washington

“Iambedriddeninadarkroomasheat,lightandsoundtriggermysymptoms:ItrytosleepduringthedayanddoanythingIabsolutelymustatnight.

TheblackDNRbracelet(inphoto)isonmyarmatalltimesnowasenergylevelshavebeensteadilydecliningeachyear.In2016Iamtakinghighdose,longtermantiviralstofightagainsthighlevelEpsteinBarrVirusaswellasothertabletsforpain,brainfog,insomnia,anddebilitatingfatigue.

Myhomehasbecomemyhospital.ME/CFScananddoesspread(viasaliva),butthereisnoonediagnosis,treatmentorcureorevennamewhichiswhat4millionpatientsinAmericaaretryingtochange‐mostlyfromtheirbeds.

#MillionsMissing

Missingsince2003:AmyE.|California

“Thismightnotlooklikeaphotoofasickperson.Butthehealthymewouldbeupright,smilingwithfriendsaround,withoutdarkglassesandabletolookintosomeone'seyes.Jan.13,2003,aseveretravel‐relatedinfectiontriggeredsudden‐onsetME.Previouslyveryenergeticandhealthy,Ican

nolongerworkandsupportmyself,enjoytimewithfamilyandfriends,orcontributetothecommunity.Idon'tevenmoveorbreathenormally.Almost14yearsagoIhadbikedeveryday,studiedyoga,hiked,climbedandcamped.Iamnow80%houseboundandcannotleavethehouseunattendedmorethan2hoursevery10days.”

#MillionsMissing

Missingsince2011:DavidB.|California

“InSeptember2011,IlostmylifeasIknewittoME.ThishappenedbeforeIcouldfulfillmydreamofgraduatingfromcollegeandpursuingadoctorateinPhysicalTherapy.Iwentfromanextremelyactiveandfullyfunctionalcollegestudenttobeingmostlybed‐andhouse‐bound,lyinginadarkroomeachdayformostofthelastfiveyears.

Atmyworst,Iwasunabletospeakormakefacialexpressions,andcouldhavebeenclassifiedaslegallyblind.Withaseverelyweakenedimmunesystem,myfourfailedattemptstoreturntoschoolledtoseriouslunginfections.Iamstillfightingthemtoday.WheneverIbegantoexperienceimprovement,IfollowedexercisetherapiesrecommendedbytheUSCentersforDiseaseControl(CDC)thatcausedmassiverelapses.IlearnedtoolatetheCDC’srecommendationsarebasedonaflawedmedicalstudyandthatexercisecanbedangerousforM.E.patients.I'vesoughtacurefrommorethan15doctorsinavarietyofspecialties,buthavebeenmetwithmostlyignoranceaboutthis"InvisibleIllness."

Fortunately,Ihaverecentlybeenblessedwithseveralmonthsofimprovement.IamusingtheenergyIhavetotrytohelpthe2.5millionAmericanswhoaresufferingwithMEfinallygetincreasedfederalresearchfunding.”

#MillionsMissing

Missingsince1999:AlanaG.|Virginia

“In2001Iwasthearchitectofa$100millionairportrenovationandexpansion.ThatwasmylastprojectbeforeIwasforcedtoadmitthatIhadtogoondisability.Ihadbeenontopoftheworld,wheremydreamshadledme–andIhadpushedtobeabletobe‐sinceIwas14yearsold.

InmylifeIhavealwaysbeengo,go,goandpushingmyselftothepointwhereIcouldn'tpossiblypushanyfurther,anover‐achieverforsure.Lateron,societyisresponsibleforpushingandnotbeingsupportivewhenweneededtobeallowedtoproperlycareforourhealth,mostoftenbeggingforourverylivesandbeingflatoutignored.”

#MillionsMissing

Missingsince2013:OihanU.|Spain

“Iamthewebmasterofthelargestweb‐fishingluresinSpain.Itraveledmanyplacesintheworldtofish.NowI

cannotfishandIhadtoquitmyjob.

IdidnotrecoverfromabadfluinApril2013.

95%ofthetimeI'mhome;ifIgooutIpaytheprice.”

#MillionsMissing

Missingsince2008:LucyM.|Wiltshire,UK

“TodayIamsickerthaneverandamcurrentlycastingaboutforviablemedicalhelp.

Twothingskeepmegoing:stubborndeterminationthatthereisapathtorecoveryandsavouringsmallgiftsofcompassion.

Wemaybeunabletoaffecttheoutcomeofahellishcircumstance,butthewayitisexperiencedcanalwaysbealteredandimproved.”

#MillionsMissing

Missingsince2014:HendersonF.|SãoPaulo

“HereIsendapictureofagreatday,withadventure,

joy,outsideactivity,andthatiswhatImissthemost.

Iammissingadventure–Imisssomuchskydiving.”

=(

#MillionsMissing

Missingsince2014:SigridV.|Norway

“IhadoneyearleftofaphysiocourseinEngland.I'mcurrentlybackhomewithmyparentsinNorwayworkingongettingbettersoIcangetbacktostudying.

Iammissingdancingallnight,goingtodancefestivalsandbeingpartofthefolkdancecommunity.

BTW,I'mtheblondegirlinthepicture.”

#MillionsMissing

Missingsince2011:NicolaS.|London,UK

I'minthemiddle.Imissgoingtoschoolandhavingfriends.

“I've had ME/CFS since 2011. I got glandular fever when I was 13 that wasn't diagnosed until 3 years later. As a result, I developed ME/CFS. It took a year for that to be diagnosed at age 14. I had such bad tiredness and headaches I had to drop out of school and be home schooled. My friends tried to be understanding but slowly I lost touch with all of them. I've had ME for 5 years now and have still not been able to finish school so I can go to university. I miss hanging out with friends and socializing, not being alone in my room day to day.”

#MillionsMissing

Missingsince2014:SarahC.|Chicago,Illinois

“I was getting my PhD in physics when I got ME/CFS. I went from graduate level physics, mathematics, and fluent French to having difficulty adding and remembering how to spell in English. I went from being a teacher, a researcher, a student, a builder for Habitat for Humanity, a

choral singer, and going dancing every weekend with my friends, to depending on my boyfriend to carry me if I needed to leave my bed. While I have learned not to push, and can get round on my own, I now live with my parents as I can't work or study. Join #MillionsMissing and help ME/CFS patients get back our lives and get back to the work we love.”

#MillionsMissing

Missingsince1989:AllisonM.|Ottawa,Canada

“IammissingbeingahappyactiveMom.

MykidswereonlytwoyearsandoneyearoldwhenIgotsick,whichwasalmost27

yearsago.”

#MillionsMissing

Missingsince2013:KathyI.

“I miss riding my mountain bike so much....

I love going down a long winding dirt trail, total concentration, maneuvering bumps, rocks & turns, reaching the bottom stretch,

yelling ‘towanda’!

This kind of total freedom was taken away from me in September 2013.

Hoping to ride again someday but until then I'm painting, doing

photography and connecting and supporting others with ME/CFS.”

#MillionsMissing

Missingsince1994:KarinB.|Ottawa,Canada

“I’m the tall one :)

I was diagnosed in 1994, when my son was a toddler.

I’m missing travel, social activities, being a ‘mover and

shaker’, sleep, really living…

Thank you for helping to bring this insidious life-vampire into the mainstream!”

#MillionsMissing

Missingsince2003:CarollynB.|California

Carollyn(standing)withchefsJuliaChilds,SusanFenigerandMarySueMilliken

“Missingtraveltodistantcities.

Lookingatmyformerself…Imissher.”

#MillionsMissing

Missingsince1997:LauraV.

“Here is a picture of me before my health fell apart... When I collapsed in 1977 at age 20 with "a mysterious debilitating illness" that remained

undiagnosed for more than a decade, I had no idea what I was in for.

As it turned out, being struck down with ME marked my exit out of a fully functioning adventurous life into one that would often be reduced to a couch or a bed. For the next 39 years I have ridden an endless roller coaster of remissions and relapses, never reaching beyond 50% of

my original level of functioning and maintaining usually at about 25% at best.

I miss skiing, hiking, swimming, traveling, performing music with friends, eating "forbidden" foods, staying up late, going dancing, sleeping deeply, feeling fully alive, and my career in Art

Therapy that I was forced to abandon in 1989.

In spite of my illness I earned two degrees, produced a CD of original music in 2000, and a film about a local political issue in 2008.

I have crashed again & again & again from the effort expended on these accomplishments, but continue to paint, write songs, and make music, refusing to allow this dreadful disease to make

me miss more and more and more than I already have.”

#MillionsMissing

Missing:EmmaC.

“Iusedtoworkasahairandmake‐upartist,andhavegreat

fungoingoutwithmyfriends.

NowIspendmostofmytimeinbed,anduseawheelchairasIcan'twalkfar.

Imissworking,dancing,longwalks.”

#MillionsMissing

Missingsince2009:JessicaP.|ManchesterUK

“AfewofallthethingsImissare...

Imissswimmingandracinginpoolsallovertheworld...

aswellasthosedirtyopenwatervenues.Imisstearingdownamountainonmyskis.

ImissbeingactiveandrunningwhenI'mtooimpatient

forwalking.”

#MillionsMissing

Missingsince1997:BlytheB.|Indiana

“This is a photo from my teen years. I got sick in 1997, when I

was in high school.

I miss working with horses. I miss being able to socialize and go out spontaneously without

relapsing afterwards.

I am missing the ability to be self-supporting, have a career, and raise a family.”

#MillionsMissing

Missing:NancyS.

“Missingthebeautyoftheworld,nearbyandinfarawaylands.

Missingjustwalkingaroundtheblockwith

friendsandfamily.”

#MillionsMissing

Missingsince2006:EmmaF.|U.K.

“I'vebeensickfor10years.IverygraduallywentfrommildMEtoverysevereME.Imisstravellingthemost.Theworldisagiftwehavebeengiventheopportunitytoexplore.Icannolongerdothat.

ForayearIcouldn'teventraveloutsidemybedroom&thisyearisthefirsttimeItravelledtothegardenin9months.Thegardenisnowmyholiday.ThisismeinAustralia2yearsago.AcoupleofweekslaterIbecamecompletelybedridden.Ihadtodropoutofuniversity,moveinwithmy

mum.ShehadtoleaveherjobbecauseIneeded24‐hourcare.LastyearIbecameparalysedandspenttimeonastrokeward.AroundthattimeIappliedforspecialfundingtoenterasevereMEwardinahospital.Thefundingof£150,000hasbeengrantedbecausemycaseissosevere.I'mnowwaitingtobeadmittedfora3‐6monthinpatientstay.Mylongtermgoalistobeabletotravelagain.AssoonasI'mwellenoughIwillbejumpingonaplane!Beingisolatedfor2yearsbecauseI'vebeentoosickforvisitors,meansImisspeoplethemost.”

#MillionsMissing

Missingsince2008:AllisonH.|Minneapolis

ME/CFSin2008;homeboundsince2012

“I'vemissedtravelingwithmyfamily,playingwithmykids,beingpartoftheirschoolevents,helping

themparticipateinout‐of‐schoolactivities.

I'vemisseddoingyoga,running,walkingthedogs,beingapartofmylife.

Weneedhelp!”

#MillionsMissing

Missingsince2013:ClaireP.|UK

“Missing...travelling,trekkingforgorillas&exploringthisamazingworld.

M.E.sufferersarehiddenfromsociety,trappedintheirownhomessothattheirneedsandvoicesgounnoticed.”

#MillionsMissing

Missingsince2001:BeccaH.

Thisisquiteanoldphoto…I'montheleft,at11yearsold,mylast

birthdaybeforeIbecameill.

“IhavebeenillsinceIwas12;I’mnow27.

Imissedallofmyteenageyearsandeducation,mydreamcareerofbeingaVeterinarynurse,socialevents,travel,relationships,playingtheflute,independence,cycling,netball,running,walking

andmuchmore.

IstilldreamofthedayImaygetwellenoughtodosomeofthesethings...untilthen,Iholdonhopingandprayingthatoursuffering

isnotallinvain.”

#MillionsMissing

Missingsince1994:LauralW.

“Imisstravelling.

ThisphotowastakenduringthefiveyearsthatIwasrelativelywell

afterbeingonAmpligenfor1‐1/2years.

WereallyneedtogetAmpligenapprovedbytheFDA!”

#MillionsMissing

Missing:MaritO.

“Imissallkindsofphysicalmovement,

butmostofall,Imisshuggingmyhorse.”

#MillionsMissing

Missingsince2013:BeckyC.|Derby,UK

“I'mmissinghiking,travelingtheworld,workingand

socializing.”

#MillionsMissing

Missingsince2011:NinaY.S.|Berlin,Germany

“Beingaverysocialpersonandlovingtotravel,Iwasenjoyingmosttomeetfriendsandfamilyandgoout.IwastravellingtoEuropeancountries,Africa,AsiaandNewZealand.Ienjoyedbeingwiththelocals,gettingtoknowpeople,andsavoringtremendouslytheforeignfoodandculture.

Fiveyearsago,duetothetravelling,mydoctorrecommendedseveralvaccinations.Ibecamebedriddenformonths,notevenabletofeedmyselfsometimes.Iamnowslightlybetterbutstillnotabletogooutforawalk,talklongtofamilyandfriendsetc.mostofthetime.

I'mmissingfromfriends,family,sociallife,travelling,eating,work,fromtheworldoutsidemyapartment,fromlife;thisispartlythesameformyboyfriendwhoisstillwithme,thatangel.

MostofthetimeI'mverypositive&donotthinkaboutwhatI'mmissing,butmorewhatIhave.”

#MillionsMissing

Missing:Anna‐KarinU.

“Missinggoinghiking.

Missingworksince2014.

Missingmysociallife,familylife,researchfundingforbio‐markersandhealth

professionalswithanunderstandingofCFS/ME.”

#MillionsMissing

Missingsince2013:SusanW.|Scotland

“I'mmissingyachtracinginWestHighlandYacht

WeekinScotlandsince2013.

TherearelotsofthingsIcan'tdojustnowbutImisstheexcitementandcamaraderieofracing

most.”

#MillionsMissing

Missingsince2003:LiisaL.|Toronto

“Ihavebeeninahospitalbedfor13years.

Imissgoingtothebathroom.Imisstheoutdoors.Imissmywork.Imissstandingup.Imisswalking.

Imissgoingoutsideformorethanjustambulancerides.Imissbeingoutsideformorethan45minutesinthepastdecade.

Imissbeingabletowearclothesandshoes.

Imisstheexperienceofliving.”

#MillionsMissing

Missing:SiriS.

“Imissgoing

hikingorbicyclingwithmyhusband.”

#MillionsMissing

Missingsince2015:ClareS.|Surrey,UK

I'msecondfromtheleft!

“I’mmissingfreedom,humancontact,family,friendsandtheirchildren,teachingandhelping

mystudents,floatinginthesea,views,hammeringmetal,thechanceofmotherhood…”

#MillionsMissing

Missingsince2002:MetteH.|Norway

“Imissmywork,myhobbies,mysocial

lifeandmygrandchildren.EpsteinBarrvirusin2002,outofwork

since2010.”

#MillionsMissing

Missingsince1988:Kalee|Alberta,Canada

“Thisphotowastakenalmost30yearsagowhileonourhoneymooninAustria&Switzerland.Itwasinconceivablethat2‐1/2yearslater,myactivesportinglifewouldbeendedbyanillnessI'dneverheardof–ME.

I'moneoftheluckyones–myhusbandhasstayedbymysidedespitedevastatinglifestylelosses.

I'mmissing:Myactiveoutdoorpursuits.

Myhusbandismissing:Hishikingpartner.”

#MillionsMissing

Missing:NatashaF.Australia

Iamtheoneatthebackwiththebluefins.

“Missingdiving,dancing,socializing,eatingoutandtripswithfriendssince

2014.”

#MillionsMissing

Missingsincechildhood:MireilleE.

Gothenburg,Sweden

“I'vehadMEsincechildhoodbuthavebeenbed‐andhouse‐boundfor3years.

Ihavenotbeenabletotravelsince2011.

I'mmissingtraveltoPariswithmyhusband!”

#MillionsMissing

Missingsince2003:A.|TheNetherlands

“Hereisaphotoofmyselfasachild;I'mtheblondoneinthemiddle.

I’mmissingoutonmylife,amarriage,children,

andthenicejobthislittlegirlcouldhavehad–ifonlygovernments,doctors,societyhadtruly

investedinthisillness,listenedtopatients,andcaredaboutME!”

#MillionsMissing

Missingsince2013:TammyF.|Miami,Florida

“Iwasamiddleschoolteacherfor13years,andapianist.IhadanactivesociallifebeforeIwasstruckdown

byMEin2013.

I'velostmycareer,myhome,mymarriage,myfriends,myfreedom,myhealth,andmylifeasIknewit.

Imisslivingwithnorestrictionsandexperiencinglifetoitsfullest!Ihadsomanyplaceslefttovisitandtravel.This

wasapictureofmeonmylasttriptoHawaii.”

#MillionsMissing

Missing:CedarS.

“Iammissinghiking,camping,and

workingfortheenvironment.”:(

Humans of ME/CFS | Solve ME/CFS Initiative

Missingsince2012:SheriP.

“Itallstarted4yearsago.Ihadhadaflushot,thenaweeklaterarespiratoryillness.

Thecoughlessened,butmylegsfeltliketheyweremadeofcement,thenmywholebodyfeltheavyandnumb,asifIhadgottenashotofNovocainfrommyshouldersdown.Thefatiguewasextreme.IlaydowntosleepandwhenIawoke,Icouldn'tmovemybodyfromtheshouldersdown.Icouldn'tsituporrolloverinbed.Icouldn'tholdatoothbrush.Myheadhurtlikeneverbefore.

AsIstartedtogetalittlefeelingback,itwasfeelingsofpainandnausea.Iwastotallydependentonmyhusbandandchildrentotakecompletecareofme‐‐dressing,bathing,feedingme.Myhusbandhastowalkbehindmewithhishandsaroundmywaisttoholdmeupandusehisownlegstomovemine.Thedoctordidnothingformebuttorefermetoaneurologist.Nohelpthere,nodiagnosiseither.Ihavenowseensevendoctorswithnodiagnosis.

Thisdiseasehastakenawaymylife.Iwasaveryactivemother,hadjustfinishednursingschool,volunteeredatchurchandschool,andworkedparttime.

Now,Ican'teventakecareofsimplehouseholdchores.Iamtooweaktostandtoevendodishes.Mygoalofbeinganursehasbeenstolenfromme.SeverityofthediseasewaxesandwanesbutIammostlycouchbound.Ican'tleavemyhomealonebecauseifIdo,Imaynotbeabletogetmyselfback.Iamnotdepressed,butIamnothappyaboutbeingill.MayGodhelpusfindacure!”


Missingsince2003:CamillaC.

“13yearsago,MEwassuggestedtomebyaGPwhenIwasillwithextremefatigue,palpitations,shortnessofbreath,etc.,theyearafterIhadmyson.Bloodtestsshowednothing.Irested,atehealthyandafterayearorsoiteased.TherewouldbeperiodsIwould"crash"andbeverysickandbedriddenforafewdays.ButthenIwouldbenormallyactiveinbetweenandrecoverfine.Myfriendsknewmeastheonealwaysonthego.Ilikedtogetoutandmakethemostoflifeandenjoyedtheoutdoorswithmytwokids.

Threeyearsago,Inoticedsomeweirdsymptoms,shootingelectricpainsinmyhands,numbness,migraines,electricshockpainsdownmyshoulderandarms,bladderproblems,severenausea,vertigo,

dizziness,roomswayingandIBS.TheGPdismisseditasmybeingastressed/depressedsinglemother‐‐definitelynotso!Itgotworsewithmusclespasms,bone‐crushingpainthatIneverthoughtpossibleandmusclesthatwereonfire.Ilostmysenseofsmellandtasteformonths,myfingerswherehardtocontrol,etc.Itwashorrific.

IhadtoinsisttheGPrefermetoaneurologist.MRIandbloodtestsshowednothing,andtheneurologistdismissedme,sayingtherewasnotmuchhecoulddo.Icriedmyeyesout.Ididgetsomemedicationtohelpwiththespasmsandeasethepainforawhile,butitcamebacklater.

Overthelastthreeyears,theMEhasimproved,thencrashedandworsenedeveryfewmonths,eachtimeleavingmeworsethanbefore,thistimecausingmetoleavework.Iwillneverforgetthetortureeverydayinthatjoboftryingtoputonefootinfrontoftheotherandkeepworkingandnotfalldowneachstep‐‐ofcollapsingandbeingwheeledoutinawheelchair.Iwouldsleepforweekscomatose.IhavegonetoEmergencyServicesforhelpindesperation….nonethere.Icriedmyeyesoutatbeingsosickandgettingnohelpagain.TherearenospecialistsinIreland,notoneconsultant.Ihadtobecomemyowndoctorandresearcherontopofbeinghorrificallyill.Eventually,aFacebooksupportgroupledmetoaninternalmedicinespecialistwhosecareI'mnowin.Ihavetopayprivatelyforthis.

MErobbedmykidsofafun‐lovingmotherinherprime,mademeaprisonerinmybodyinmybed,hasusonthebreadline,makesmecryattimeswithalevelofpainandsicknessIonlyimaginedonewouldexperienceclosetodeath.Howisitpossiblenottohaveanytreatmentafteralltheseyears?Throughout,I'malwaysstrongandpositive,butboydoesMEtestyourlimits.”


Missing:LisaD.

“Losingmyfatherwasanabstractionuntilnow.I’vesentmyshareofsympathycardstofriendswhoseparentspassedaway,butonlynowisitpossibletoprepareformyowninevitablegrief.

Mydadisinanursinghome,bedbound,blind,dyingaslowlonelydeathduetocongestiveheartfailureanddiabetes,butIcan’tbetherewithhim.Ican’tholdhishandtocomforthimorplayCDsofhisfavoriteBeethovensymphonies.Ican’tlistentohimrecountthe

storiesI’veheardhimtellamilliontimesorlaughathiscornyjokes.Whynot?BecauseIamtooilltotravelcross‐countryduetoCFS/ME.Evenabriefphonecallwithhimexhaustsme.

IamaformerTriathletewhoworkedfulltime,travelled,andclimbedMt.Kilimanjaro.Now,Iamcompletelydependentonmyhusbandtocareforme.Ifeelisolatedandlonely.Itdepressesmethatresearchfundingissosparsewhensomanyofussuffer.Itaddstomyhopelessness.

CFSmakesadifficultsituationunbearable.ItisdevastatingtobesoincapacitatedthatIcannotbepresenttohelpcarefortheremarkablemanwholovedhischildrenunconditionally.DadworkedthreejobssothatmysiblingsandIcouldgetacollegeeducation.Healwaysofferedencouragementandgavesageadvice.Fromdayone,Dadputusfirst,andyetIcannothugorkisshimonelasttimebeforehecrossestotheothersideduetoacommon,little‐known,incurable,mysteriousillness.Aperverseillnessthathasdrainedmeofallmyenergyandkeptmehouseboundfor12years.IttormentsmethatIcannotsaygoodbyetomybelovedfatherinpersonorattendhisburial.

ItolddadthatIwishedIcouldbetheretohelphimandhereplied,“IwishIcouldbetheretohelpyou.”


Missingsince1986:AnitaP.“In1986,Icamedownwithasuddenviralillness.Within2weeks,Iwasunabletowalk.Iwas24andhadbeenworkingfull‐timeasawordprocessorforalawfirm.Ifoundmyselfcompletelydisabled,bedridden,unabletowork.

Itwas11yearsbeforeIfoundacorrectdiagnosisandadoctortohelpme,DanielPetersoninInclineVillage,Nevada.Dr.PetersonisapioneerinthefieldofME/CFS.Hisdeterminationhasneverwaveredfrompursuingthecauseandtreatmentsforthishorrible

illness.IwasoneofthefirstfiveofhispatientstobeontheAMP‐511clinicaltrialandgotAmpligenforthefirsttimeinDecember1997.Ihadawonderfulresponseandwasonitcontinuouslyforeightyears.Ienjoyedincreasedenergyandbrainclarity.Thatallowedmetocareformyfamilyandadvocateforfellowpatients.Ihaveneverhadanysideeffectsfromthedrug.

Iwentfromnotbeingabletowalkupthestairstobeingabletoexercisefor19minutesonthetreadmill.Thejoythatevenasmallimprovementcangiveaperson,tobeabletodohouseholdtasksorgetoutofthehouseandtakewalks,issomethingthatmanypatientsdonothave.Thesufferingisimmense.Manypatientshavetolieinbedfor18hoursaday,asIdidbeforeAmpligen.Manypatientshavelostallfriendsandfamily.

Havinganyhelpissomethingtobegratefulfor.IonlyhadthatchancebecauseofAmpligen.IbecameanadvocateforME/CFS.ItookbikeridesandhikedwithmykidsandwasthemotherIhadalwaysdreamedofbeing.Iattendedeverybaseballgameandschoolperformanceandvolunteeredintheirclassrooms.Itwaslikerisingfromthedead.

Iwatchthesufferingoffellowpatientsandtheheartbreakofmanypeoplethattaketheirownlifebecausetheycannolongertoleratetheyearsofsufferingwithnotreatmentsorhope.Therearenoapprovedtherapiesforthisillnessandonlyonedrug(Ampligen)currentlyinclinicaltrials,soIurgeyoutoapproveAmpligeninordertogiveothersthehopeandthechancetogetwell.”


Missingsince1996:KellyS.

“Iam25yearsold,unabletowork,andliveathomewithmyparents.

Istartedshowingsymptomsofdiseasearoundtheageoffive.Fatigueandpainhavealwaysbeenmytopcomplaints.Ofcourse,Ihaveatleastahundredothersymptoms,butIwouldtakethemallifIcouldjusthaveadaywithnopainorfatigue.

OvertheyearsIhavegraduallyworsenedandIseemtogetanewillnesseachyeartoaddtothepileof

diseases.Iammainlybedriddenandhavebeenforyearsnow.Iamalwaysrestingbutgettingnorest,neverfeelingrefreshed.Tryingtochargebatteriesthatwon'tcharge.IhavethoughtaboutsuicidemoretimesthanIevercouldcount.Iliveaveryisolatedlonelylife,asmostsufferersdo.

Sometimesitfeelsasifmybodyisshuttingdownonme.Ithinkaboutgoingtotheemergencyroom,notevenabletomakeittothecarifIdecidetogo.Irarelydecidetoanyway,becauseeverytimeIeverhavegoneformyinvisibleillnesses,theyhaveneveroncebeenabletohelpmeinanyway.Ithinkthereisoneworsethingthanactuallydying,andthatisfeelinglikeyou'redyingrepeatedly—justtolivethroughitagainandagain.

MyfamilyhasitmuchworsethanIdo.Ican'timaginewatchingalovedonesufferasmuchasmyfamilyhashadtowatchme.Iamafinancialburdenaswellasanemotionalburdentothem,althoughnoneofthemwouldeveradmititoreventhinkitforthatmatter.Andthat'swhydespitethesehandsIhavebeendealt,IamstilloneoftheluckiestpeopleIknow.IgotobedthankingGodforeachandeverydayandIfeelblessedinsideandoutbecauseIhavepeoplewholovemeanabundantamount.IfIneverfindmedicinethatworks,ifthereneverisacure,ifIsufferuntilI'm90yearsold…IcanstilldiehappyandfulfilledbecauseIhavebeenblessedwithangelsinmylifeandnoteverybodycansaythat.”


Missingsince1997:SophieK.

“May1997,afluthatdidn’treallywanttobebecomeaflu.DuringmytimeinbedandonthecouchIdecidedIwantedtogotocollegeafterallsoI,afterwhatseemedlikeaneternity(2.5weeks)wentbacktomytempjobandtoldthemthegoodnews.Thenot‐flukeptlingeringonsoevenmylastfewweeksonthejobwerespentathome.

InSeptember,schoolstartedandImanagedfinethefirstmonthorso,then“it”camebackandfromNovemberonIwaspracticallyhousebound,perhapsonceamonthcrashingonafriend’scouchafterameaslytriptothemall.Sorethroat,feverish,“fatigued”

(worstdescriptionofeverycellinyourbodyyellingNOtomovement),achingbonesandanindistinctpaininthemiddleofmyhead(andmydad)drovemetothedoctor’soffice.

Bloodwasdrawn,resultscamebacknegative.Afterawhileheallowedmetogototheinternalspecialistatthehospital.Avirus,CoxsackieB,wastoblameandwithinayearIshouldbeupandrunning,sailing,shopping,learning.

Theyearpassedsilently.Fullycountingonthespecialist’sestimate,Ienrolledforasecond(andnextyear’sthirdandfourthtime)incollegebuteventryingtogowasoutofthequestion.Ispentmydaysonthecouch,behindthecomputerchattingtofriendsorstaringatthewallorTV.

Itbecameafamilyproject;mymomwouldchoosean(alternative)doctororbuyabookdescribingcuresandwe’ddecideonwheretogonext.Mydadwouldtransportmetowherevertheantibiotics,reikiorenergetichealerwaslocated.Mostdidn’tworkormademeworse,somehelped.Thingsstayedprettymuchthesame.ArealdoctorwithadegreeandeverythinggavemeantibioticsforMycoplasma,whichIbarelymadethroughtotheend,Igotsosick.SinceallelsehadfailedIwentbacktothehocus‐pocuslady,andallbrain‐hellbrokeloose.ForweeksIcouldn’twalkastraightlinefromdizzinessandneededabathroomwithindrunk‐walkingdistanceincaseofreturningmeals.Mybrain,eyes,eventeethstartedtremblingandslowlypartsofmeseemtobeworkingagain.

WillIindeedbewellsoon??”


Missingsincethe1980s:CarolH.

“Iamoneofthefortunateones.

IwasknockeddownbywhatInowknowwasMEinthe1980s,whenIwasinmy30s.Verylittlewasknownaboutthisoddthingthathappenedtome…IwasexhaustedbeyondanythingIhadeverexperienced,andfornoapparentreason.Ihadadebilitatingheadache,24/7formonthsonend.Mythroatwasalwayssore.Buttheutterexhaustionwastheworst.Therewasnoamountofwillpowerthatwouldallowmetofunctionnormally.Atitsworst,thegoalofmydaywassimplytotakeashower.

Forroughlyfouryears,thisdiseasedominatedmylife.Iwasunabletoworkforseveralmonths,andhadseveralyearsinwhichmyentirebeingwasfocusedonrestingeverypossiblemomentsothatIcouldcontinuetoworkandbeself‐supporting.Friends,hobbiesandfunfellaway.

Doctorsdidn’tbelievethatIwassick.Friendsandfamilydidnotunderstand.AndIpluggedonthroughit,withnoideawhen,orif,itwouldeverend.

Itwasadifficultandhumblingtime—realizingthatthedreamsIhadhadformylifemightnotevercometobe—thesimpledreamslikehavingchildren,playingsports,goingouttodinnerwithfriends,doingsatisfyingwork.Whenwe’reyoung,wethinkweknowthetroublesthatmaylieahead.Iwouldneverhaveanticipatedbeingsickwithsomethingthatfewbelievedwasreal,nocuresortreatmentsandwhichcausedpeopletoquestionmyintegrity.

IamfortunatethatIgotbetter.Slowly.Overthecourseofmanyyears.IsaythatI’m95percentwellnow.ThetruthisthatIalwayshaveaconsciousnessofhowmuchenergyIhaveexpendedandwhenIwillbeabletogetenoughsleep.Buttheseareminortroubles.Idodgedabullet.Asignificant,awfulbullet.AndIdon’tknowwhyorhowIdodgedthatbullet.Myheartbreaksforthemillionswhoarenotsofortunateandwhocontinuetosuffer,dayafterday.”


Missingsince2003:SharonS.

“MyillnessstruckjustasIwasfinishinghighschool.IrememberwakingupthemorningofmySATsandfindingthatnumbersseemedlikestrangehieroglyphics.Ibombed.Iwassoashamed!(IlaterrealizedthateverytimeIrelapsed,numberswouldbeaproblemforme.Istilldon'tunderstandwhy.)Fortheothersymptoms,Ifoundself‐deprecatingexcuses:lazy,clumsy,forgetful,lackingdiscipline,etc.Itoldmyself‐‐andanyoneelsewhomighthavenoticedsomethingoffaboutme‐‐thatIwas"justcomingdownwithsomething."

Asyearswentby,Ifounditmoredifficulttodoeverydaythings.Sure,thereweretimesofnear‐normalcywhenIwasabletofoolmyselfandmyfriends;butmoreoften,Istruggledwithbeingabletomakeandkeepdatesor

appointments.Oldinterests‐‐hiking,skiing,cycling,paddling‐‐weregivenup.Ijustcouldn'tkeepupwithmyfriends,andthecostoftheexertioninthedaysandweeksafterwardwastoosteep.Houseworkandhygienesuffered.Relationshipswereneglected.Eventually,Ihadtogiveupworking.

WhenImarried,myhusbandknewIwasill;althoughneitherofusknewwhatIwassickwith.Duringtheyearleadinguptoourmarriage,Iwasreelingfromtheeffectsofaboutofstrepthroatandflu.Hewasunderstanding,andsincehedidn'twantmetoworkanyway,Iwasabletoslowlyregaingroundlosttomylastjob.

Webeganayouthministry.Atonepoint,aclosefriendpointedoutthatit"wasn'tnormal"thatIconsistentlyneededdaysinbedaftereveryevent.Sheurgedmetogetmedicalhelp.Ihadbeenindenialforsolong.Thedoctorfirstdiagnosedmewithmononucleosis.Whenthemonohadn'timprovedafterayear,shere‐examinedmyfullsymptomrosterandchangedthediagnosistoCFS.

ShereferredmetoaspecialistwhogavemeadvicethatIdismissedatthetimeastoosimple,buthavenowcometoappreciateforitspracticality:propersleephygiene;avoidalcohol,caffeineandsoda;restwhentired(Iscoffedundermybreath,"whenamINOTtired?I'llberestingallthetime!");eatahealthydiet;keepajournalofactivitylevels....etc.

Thirteenyearshavepassedsincethatdiagnosis.Iamstilllearninghowtopace,toreadmybody'ssignalstoavoidmostcrashesandusemobilityaids.Myfamilyandfriendshavejoinedmyhusbandinsupportingmeandencouragingmetorestandnotover‐exert.TherearegooddayswhenIcansocialize,pursuehobbiesorworkaroundthehouse;andtherearebaddayswhenIhangonandhopetosurvive.”


Missingsince1991:LisaE.“IsuddenlybecameillonJanuary27,1991.Iwasanactivewoman—awifeandthefull‐timeworkingmotheroftwosons,a3‐year‐oldanda6‐week‐old.IwrotethefollowingpoemtwoyearslaterasitexpressedtherawemotionsIfeltlivingwithME/CFS.Ithastrulybeenarollercoasterride,withthe“peaks”lessthan50percentofthe“personIusedtobe”pre‐illness.

Iamnowinmy26thyearoflivingwiththisillness.Thislastyearhasbeenbrutal,leavingmemostlyhomebound.Icouldhavesatdowntoday,thismanyyearslater,andwrittenthissamepoem.OtherthanthechangeofnamefromCFIDStoME/CFS,thefeelingsarethesame.

Mylifeisforeverchangedandcontinuingon,withapurposeforeachday,ismygoal.Ihavelearnedtorelyonfaith,gratitude,mindfulnessandgrit.

ROLLERCOASTERRIDE

RidingonthecrestoftheRollerCoaster–Ontrackwithalovingfamilyandrewardingcareer,Lookingforwardtoaccomplishingmoreofmylife’sambitions,Livingforfuturegloriestobecomehappymemories,Everythingisatanacceleratedpace.Rightwhenmylifeseemsatitspeak;theridetakesadip.CFIDS.Oh,theanxiety,theexhaustion,thepain,thefright,theisolation.Angersurfacesandburstsoutateveryopportunity.Self‐esteemplummets—whereareallmypillarsofpride?Todaystretchesintoathousandtomorrowsinsnail’s‐pacemotion.Existencebecomesadaybyday,minutebyminuteeffort.Relinquishingindependence,fightingforanounceofenergy;restandmorerest.Regainingmomentum;Reflectingonmylife;Searchingmysoulforgemsoftruth,Inchingmywayforward,everthankfulforsmallshifts—bothmindandbody.DeterminedthatIwillconquerthisillness,whethercuredornot;EndingonecycleonlytocatchanotherRollerCoasterRide.”


Missingsince2009:MelaniS.

“ThefirstweekofgraduateschoolwasonlyafewweeksawaywhenIsuddenlybecameverysickandmysteriouslydidn’tgetbetter.Iwaspoisedtotakeonafulfillingcareerinhealthsciencesresearch,fillingmyleisurehourswithrunning,cycling,hikingandotheroutdooradventures.Butitquicklybecameapparentthatschoolwasnotgoingtobefeasible,andneitherwasmylaboratoryjob.Iessentiallyhadtodropoutoflifeandtrytofigureoutwhathadtakenovermybodysoviolently.

Thatwasjustover7yearsago.I’vemanagedtoadjustmyexpectationsdramaticallysincetheninordertoleadassatisfyingandmeaningfulalifeas

possible.I’veenduredagreatmanychangesovertheyears:returningtopart‐timework,takingafewcollegeclasses,gettingmarried,openingmyownbusinesses,losingmyjobagain,sufferingamajorrelapse,gettingdivorcedandmovingtoanewarea.Eachdaybringsanewsetoffeelings,bothphysicalandemotional,andIcreditmyyogaandmeditationpracticeforkeepingmeafloatinthisoften‐turbulentsea.

I’velearnedalotaboutradicalself‐careandhavehadtolearnthehardwayhowtoprioritizemyneedssoIdon’tgetsicker,evenattheexpenseofcareeropportunities,friendships,socialinvitationsandvacationplans.It’sfrustratingbeingsoyoung(I’monly29)livingwithaninvisibleillness.WhenIwalkdownthestreet,nobodysuspectsthatIhaveadebilitatingdiseasethatpreventsmefromdoinghalfthethingsIwanttodo.EverytimeIgettoknowsomeonenew,IfeellikeIhaveto“comeout”overandoveragain,whichonlycompoundsthefeelingsofisolationthatIdealwith.

Luckily,I’vehadtheprivilegeofgoodhealthinsuranceandhaveworkedwithagroupofgreatdoctorsovertheyears.Butnomatterhowamazingtheyare,ME/CFSstillremainsamystery;amysterythatrobsmeofsleep,energy,cognitivefunctionanda“normal”youngwoman’sexistence.I’mmanagingfairlywellrightnowthankstoacombinationofprescriptionmedication,dietaryinterventionandalternativehealing.Buildingonmybackgroundinhealthsciences,Ihopetogetcertifiedasaholistichealthprofessional,andworkwithotheryoungwomenaffectedbychronicandinvisibleillnesses.Aswellasbeavoiceforchange,foreducation,andforresearchfunding!”


Missingsince2003:MadalineF.

“Ican'tsayIhadaneasy,stress‐freechildhood,butIknewIwasloved.Iwasanonlychildathomewitholderparents.Momhadbadheartcondition,anddiedwhileIwasstillateen.Shewasmyworld.Imanagedtohaveaprettynormallife.Marriedandraisedfourbeautifulkids.

Kidsweregrown.Icamethroughahorribledivorceandsomecrazyrelationships.

Iwasunderalotofstress,newlyremarried.Iwasworkingastressfuljobandlivingwithmynewhusbandandhisteens,whowereraisedverydifferentlythanIraisedmybabies.

Iwas50yearsoldwhenIfoundoutIhadfibromyalgia.Alwayswakingupinpain.Acoupleofyearslater,Icaughttheflu.Icouldn'tgetoutofbed.Iwentdownhillprettyfastfromthenon.Wenttopart‐timeworktonowork.Wentfromgoingtoparties,cardgamesandluncheswithfriendstostayinginbed.Hurtingallovermybody,especiallymyneck.Andcompletely,utterlyexhausted.

Isaidtomydoctor,IthinkIhaveCFS.HesaidOhyes.AndperhapsMS.Well,theMSnevercame,thankfully,butIwascompletelybedboundforthreeyears.

WhenIfoundapaindoctorandalsoreceivedCorteffortheexhaustion.Itchangedmylife.Iwasoutofbedtodominorchores.

Idonotgetanyhelpfromanyonearoundhere.NoonebelievesinCFS.ButIdogethelpfrommypaindoctorforthefibromyalgia.Sheisabouttoretire,andIamsoscared.WhatamIgoingtodowithoutthehelpofpainpillsandCortef?Icangetoutofbedwiththose.Ican'tdoalotofthingsstill,butIdon'twanttogobackwards.HereinOregon,theyhavemadepainmedicinesoundlikeitisevil.Iknowitsavedmylife.IwouldhaveendedmylifeifIwouldhavehadtogoforeverwiththatpain.Iwasbecomingsoextremelydepressedandattheendofmyrope.WhenIfoundmypainspecialistandIreadasmuchasIcanandfoundoutthroughtheSolveME/CFSInitiativeandothergroupsthatIamnotalone,Ifeellessafraid.

Iam63now.Myhusbandstilldoesmuchoftheworkandshopping.SometimesIcangodoalittlebitofshopping,butIusuallypayforitbybeinginbedfordaysafterwards.”


Missingsince2001:StephanieS.

“ManyME/CFSpatientsareforcedintotheinescapablebutnecessaryisolationofsolitude,longingfortheface‐to‐faceconnectionwefeltwithlovedonesandtheworld.Evenshortvisitscomewiththeinevitablepost‐crash.

Nowat62,Iwas“lucky”enoughtobe47whenME/CFSdescendedonmelikeathief,robbingmeof….”me.”Igrievethatyoungsufferersmaynevergettolivefulllives.

Growingup,myhealthwasmorefragilethanothers,butImanaged.Inmy20sIownedabusiness,solditandtraveledtoEcuadorasamissionary.ThenIembarkedonamusiccareerandlaterworkedmywayupinaFortune500

computercompany.At40Imarriedtheloveofmylife.

At47Iwasfeelingincreasinglymoreilland,afteraboutwithaninfectionfollowedbyafluthatlastedweeks,becameaninvalid,soweakIcouldhardlymove,andwithdebilitatingnausea.Thencamethe“ElectricalStorm.”

Ifyou’veevertouchedanelectricfence,thatawfulresidualtinglingiswhatcoursesthroughseeminglyeverynerveandmuscleinmybody….for14years.Myheartcontinuouslybeatsforcefully,electricalcurrentshootsoutintoallextremitiesandmyhead,evenaffectingmyvisionasthoughI’mseeingtheworldthroughthescreenofabad1950ssnowyTVset.Triggerscanmakeitworse:brightlight,noise,freneticTVshows,morethanafewminutesonthecomputer,talkingonthephone.Nomedicationmakesitbetter.

Ispendabout12hoursadayinbed,12inmyrecliner,gettingupforafewminutesatintervals,jokinglycallingit“my5minutelife,”gratefulthatIcanbathemyselfandmakefood.HavingPOTSmakesitdifficulttostandevenwithFlorinef.

OvertimeIspenttensofthousandsofdollarsseeingdozensofdoctorsingruelingappointments,fromhomeopathstotropicaldiseasespecialists.IrealizedthatIhadsevereME/CFS.Fiveyearsago,afterafruitlessweekinaHoustonhospital,ImadethedecisionthatIwouldnolongersubjectmyselftoanymoretorturoustestsordismissivephysicians.IknewinmyheartthatIwasneithercrazy,“clinicallydepressed,”nortryingtogarnerattention.Whowouldchoosethisdisease?

ThebestadviceIcangiveisthis:Youhavetomakeadecisiontolive,takingeachdayatatime,findingSOMEjoyinthedayorthemoment.TherearemillionsofpeoplearoundtheworldwithME/CFSandweare‘togetherinourisolation.’”


Missing:SarahL.

“Iplayedtrumpet,sangchoir,captainedthehockeyteam,sailedandclimbedmountains.Itraveledtheworld,andIachieveddegreesandwasbusyandalwaysmanagedtokeepgoing,nomatterwhat.Andthatwastheproblem.BecauseIkeptfeelingmoreandmorelikeIwaswadingthroughtreacleandthenIwouldstarttofeellikeIwasblackingout—sobadwastheintolerableexhaustionthatwouldmakemeunabletogetoutofbed.

WaybackIdiscoveredthatthestressofacademiawasnotgoodformesoIbecameayogaandmeditationteacher.IwastoldIhadPTSD.SoforyearsIstruggledandtriedtomakemyselfswimand

dozumbaandyogafourtimesaweekandteachsixyogaclassesandIgottheinitialhighfromtheexercisebutthenwouldwakeupinthenightfeelinglikeIhadbeensavagelybeatenup.Migrainesstartedin2006,thesameyearIbegantobebulliedbymyboss.

June2009IwasverballyattackedseveraltimesinfrontofmycolleaguesbymybosscausingatotalbreakdownwhereIcontinuedworkingbutwasinwardlyfracturingwiththestrain,painandstress.ThreeyearslaterIcouldnolongerevenstandtowork.AllmysymptomswereputdowntoPTSD.November2015Iwasdiagnosed,tomysurprise(duh!)withME/CFS,whichsuddenlymadesenseoftheconfusionthatmylifehadbecome.NowItrytofindabaselineandgoouttoachoironceaweekandhavegivenupallaerobicphysicalstuffasIjustcan'tbearthebeatenupsensationthatfollowsit.

Idosailthough.IgetmyhusbandtohaulseveralsailsupandthenIrestforseveralhourslookingattheseaandtheskywhilsttheboatsailsalonghappily.Perfect.AndIwritemore.Iwritepoemsandshortstories.AndIkeepremindingmyselfthatChurchillwrotefromhisbedandsodidFlorenceNightingale,andsoIkeepabreastofthetopicsIaminterestedviamylaptopsittingproppedupinbed.Iresearchandstudymindfulness,self‐compassionandneuroplasticity.

IamstillastonishedhowphysicallydebilitatingMEis.Icouldrushoutofthehouserightnowifoneofmykidswasindanger.ButIwouldbeinpainalloverandfeelthatawfulblackingoutfeelingquitesoonaftertheexertion.AndIhatethat.Butyouknow,Iamtryingtolearntobekindtomyconditionandstillfindwaystoliveaninterestingandfulfillinglife.Ihavehadtolearnthatmylittleenergyispreciousandshouldbeusedwell.”


Missingsince2009:SiobhanB.

“Iam23yearsold,andI'vejustbeendiagnosedwithMEafterbeingsickfornearlysixyears.Iwasaprofessionalballetdancer,dancingwiththeRoyalWinnipegBalletwhenIstartedtofeelill.

TherewereafewinstanceswhereIcanimaginethisallbegan.Ihadafewboutsofinfectionfromvariousillnessesandsurgeries.Fromthenon,Ibegantofeelweakandill.Iwasdancingmylittleheartoutandcouldn'tcopeafterawhileofpushingmyselftomylimits.

ItgottothepointwhereIhadpushedmyselftoofarandthingsgotoutofcontrol.Iwashospitalizedandhad

toreturnhometoBritishColumbia.IthoughtmybodywasjusttellingmetorestandrecuperateandthatIcouldreturntoWinnipegafterafewweeksoff.

Twoyearslater,Ifoundmyselfstillillwithnoanswers.Iwenttocountlessdoctorsandnaturopathsandneverfoundmyselfbouncingback.IwouldexplainhowIgained40poundsinwhatfeltlikeoneday.Ifeltdizzy,nauseous,hadvisiondisturbances,menstrualissues,gutissues,almostnoenergy,whichcausedanxiety,moodswings,depression.IfeltlikeIhadlostmyidentity.IdecidedtoauditionfortheCanadianCollegeofPerformingArtsinVictoria,BC.IwasacceptedandstartedinSeptember2012.IthoughtperhapsgettingbackintodancingandexerciseandbeinginanenvironmentthatIlovedagainwouldhelpmefeelbetter.Itdidtosomedegree,asIwasrunningoffadrenaline.However,IwouldcrashlikeI'dnevercrashedbefore.Betweeneachyearinthesummerholiday,Iwouldcomehometomyfamilyandhardlydoanythingallsummertorecuperateforthenextyear.Thiswasathree‐yearprogram,andIgraduatedinFebruary.IamsogladIattendedthecollegeasInowhaveapotentiallypromisingcareerinMusicalTheatre.

SinceFebruaryhowever,Ihavefeltworsethanever.Ihadabigcrashjustaftergraduationanddidn'tgetoutofbedforaboutthreeweeks.InJune,IgotacallfromtheComplexChronicDiseasesProgramatB.C.Women’sHospitaltosayIwillbestartingattheirprogram.I'vesincestartedtheprogram,startedatreatmentplanandgotasupportivesetupathomewithaflexiblejobtoallowmetorest,butstillsavesomemoney.Iwillbehereforaminimumofayear,butlookingforwardtoenteringremissionandstartingmycareerinTorontoorevenLondon!Ihavehopethatwewillraiseawarenessandalllivehappilyeverafter!”


Missingsince1990:AprilT.

“I'vebeensickwithME/CFSnowfor26years.Itallstartedformewithacaseofmonoonmy19thbirthdaybackincollege.Ineverfeltthesameafterthat.

WhenIlookbackthroughtheyears,IrealizeIdidlearntopacemyselfthroughmostthings,eventhoughIwasn'tfullyawareofthatrightaway.Despitebeingill,Ididreceivemybachelor'sdegree,eventuallygotmarriedandhaveabeautifuldaughterthattrulyinspiresmeeveryday.

I'velearnedtoprioritizewhat'smostimportantinmylife.DuetothemajorlimitationsIhave(energybeingthemost),Iamcurrentlyastay‐at‐homemom.Iam

veryfortunatethatIhavethisasanoption.Thisway,Ihavemoretogivetomyfamilywithmylimitations.I'mluckytohaveakind,supportivehusbandwhohelpsmeoutwithmanydailytasks.Besidesbeingthesolebreadwinnerofourfamily,healsocooksandhelpsoutsomuchwithourdaughter.Iamverygratefulandblessedtohavemyfamily.Theyaretrulymyinspirationandwhatkeepsmegoing.

Ittrulyhasbeenadailychallengeovertheyearstotrytokeepmymindfocusedonthepositive.TherearesomanytimesItendtothink"ifonly"Icouldworkandhelpoutwiththefinances,playmorewithmydaughter,haveacleanhouse,cookmoreandthelistgoeson.Idomournthelossofmylifethatcould'vebeenifIhadn'tbeenillalltheseyearswithsuchamisunderstoodillnesssuchasME/CFS.Itrynottocomparemyselftohealthyindividuals.Somedaysareeasierthanothers.Ididn'taskforthis,soIknowIshouldn'tfeelguilty.

I'vealsolearnedmanythingsaboutmyselfovertheyearsindealingwithME/CFS.I'velearnedwhoIcancounton.Itseemsasmoreyearsgoonthere'slesspeople,butI'veacceptedthatandknowthatIdohavesupportivepeopleinmylifethankfully.I'velearnedhowtobemyownadvocatewhenitcomestotakingcareofmyself(sincethemajorityofmedicalprofessionalsdonotunderstandME/CFSorreallytryto).I'velearnedtolistentomybodyandrestwhenIneedtoifIcan.Somedaysarebetterthanothers,ofcourse.I'vealsolearnedtonotcareaboutwhatotherpeoplethink.

LivingwithME/CFShasdefinitelybeenlife‐alteringinalmosteverywaypossible.MygreatestwishisthatthosesufferingwithME/CFSgettherespecttheydeservefromthemedicalcommunity,alongwitheveryoneelse.ThisbyfarhasbeenthehardestpartoflivingwithadevastatingillnesssuchasME/CFS.I'mhopefulthiswillchange.”


Missingsince2005:KateS.|Philadelphia

“Ispentthefirst20yearsofmyliferidinghorsesonmyfamily’sfarm,playingfieldhockey,spendingtimewithfamily,studyingpoetry,cartwheelingandsingingeverywhereIwent.Lifewaseffervescentandkind.However,forthepast11years,Ihavespenteverysecondpushingmentally,spirituallyandphysicallythroughCFS,anillnessthatchockedmetothesidelines.

Fromthisnewvantagepoint,Ihavelearnedthevalueofspiritualevolution,andmymindhas

becomemuscularinitsdetermination.Mybody,however,hasnotlearnedhowtoreclaimitsformervigor.Isufferthroughimmensepainandfatigueeachday.Inordertoteachanightclassatacommunitycollegethreedaysaweek,Imustsacrificemyentiredaytothebed,thebathtubandtheyogamat.

MyhusbandpreparesmymealsandmassagesmybodysothatIcanrestandwalkwithoutalimp.At5p.m.,IwalktheoneblocktoCommunityCollegeofPhiladelphiatoholdofficehoursandteachanightclass.Uponreturn,mybodyisachingforsleepandmyheadpoundingwithamigraine.Yet,Idothisbecausethealternativemeansafigurativedeath.

IfIdon’thavetheopportunitytocontributetotheworld,toteach,toencourage,thenmyillnesswouldvanquishme.Ipushandstruggle,anditexhaustsme.ButImustcontinueforward,sacrificingmylonglistofambitionsforthetinymomentsofjoyandgratitude,castingextraburdensuponmyhusbandandfamilyandfriends.Thispathismentallytreacherous,butI’mthekindofwomanwhowillkeephikingtothetop,aslongashopedangleslikearopefromtheprecipice.”


Missing:PippaS.“WhenIwas15yearsold,Istartedtoexperienceageneraldeclineinmyhealth.Ifeltfatigued,lightheadedandexperiencedpaininmylegsandfeet.EverydoctorIsawattributedthisto“beinglazy”and“justhormones.”EventhoughIwasaballerinaintraining,anactivevolunteerandonmyfeetfor10+hoursaday,IwastoldthatIneededtoimprovemyfitnessandjust“tryabitharder,”andthenIwouldfeelbetter.

Overthenextfouryearsmyhealthcontinuedtodecline,thoughImanagedtogaingoodmarksinmyexams,getintomytop‐choiceuniversityandhaveanamazingfirstyearof

beingastudent.However,duringthesummerfollowingmyfirstyearasIwasvolunteeringabroad,Iexperiencedahugerelapseandbecameseverelyunwell.

Itwasthismassivelossoffunctioningthatfinallymadethedoctorstakenotice,andIwasdiagnosedwithME/CFS.DuringthattimeIwasunabletowalk,struggledtotalkandfeltutterlymiserableforaboutamonth.However,Imadegradualimprovementsandhavebeenluckyenoughtocontinuewithmystudies.

Iamnowabouttoentermythirdyearofuniversity,andI'mnolongertheactive,fun‐lovingstudentthatIoncewas.Ihavesignificantmuscleweakness,whichmakeswalkingdifficult,alongwithmemorydifficultiesandimpairedcognitivefunctioningwhichmakestudyingachallenge,sensoryimpairmentwhichmakesleavingthehousepainful,andpost‐exertionalmalaise,whichmeansIhavetostrictlypacemyselftoavoid“crashing”andbeingconfinedtobed.

It'snotaneasylife,andeverydayisastruggle.However,afteraboutayearofgrievingformyoldlife,I'mstartingtofeellikemyselfagain.Ihavesomegoodlaughswithmyfriendsabouttheawkward,embarrassingandjustplainuglysituationsthathavearisenfrombeingill,andIdojokeaboutmysituationalot.I'mhopingtousemyownexperiencetoworkwithchronicillnesssufferersinthefuture.

Theonethingthat'sbeenmostinfluentialinmyillnessjourneysofarishowmuchthelittlethingsmatter.ThisledmetocreatemyfundraisinginitiativeSpoonieSurvivalKits(“Spoonie”beingtheslangwordforachronicillnesssufferer).Thekitsarelittlebagsofhappinessthatremindpeoplethatsomebodycares,fundedoffdonationsandmyownmoney,andthensoldonlinetoraisemoneyforchronicillnesscharities.We'recurrentlyreachingthousandsofpeoplein41countries!”


Missing: SuzetteB.

“Myspiritfloatsoffthecouch,gracefully.Butshehastoturnaround,gestureatmetogetup.“Can’tyoushowmehowtolevitate?”

“No,”shescolds.“Notuntilyou’redead,andthenonlyifyou’renicetome.”Mybodyrolls,grunts.There’snothinggracefulaboutit.

Or,Iaskher,“Rememberthestoryaboutmyhusband’sgraduateseminar?Howtheprofessor’sbackpainforcedhimtoteachlyingdownontheseminartable,thestudentssittingaroundhim.Doyouthinkthey’dletmemovemycouchintotheclassroom?Andbringsomepillowsformyneckandforundermyknees??

“Yourlegsstillwork,andyourbackpainisn’tthatbad.Getup.”Ido.“ButwillIgetdizzydrivingtoschool?Willmylegsgonumbwalkingacrosscampus?Willthefloormoveintheclassroomagain?Todistractherandmyself,IthinkaboutthatwomanImetintheCFS/MEdoctor’sofficewhenIwasfinallydiagnosed.Curly,blondehair,attractive,shedidn’tlooksick,butIcouldseethepainetchedaroundhereyesandhearitinhersoftvoiceasshementionedtheskull‐crushingheadache.Iknewthatpullinginofherbodytosteadyherselfagainstallthemovementandnoisearoundus.ItwasthefirsttimeIunderstoodIwasn’taloneandinvisible,thatifyoulookedcloselyenough,theactdidn’treallywork.

Theproblem,Itrytoexplaintomyspirit,isbearingyourownweight.Shedoesn’tgetthat.“Mybones,muscles,theyallfeellikelead,andwhendidtheairaroundmebecomearagingrivercurrentIhavetodragmybodythrough?”"Yourlastdayofcycling,”myspiritanswers.Ireturnedhomeafterjustahalf‐houronalevelroad.Icouldn’timaginemylightframemovingeasilythroughaireveragain.

“Someofthoseantidepressantsfooledmeintofeelinglight,again.Therewasthatonemakingmypupilshuge.”WhenthedoctoraskedhowIwasdoingatthefollow‐up,Itoldhim,“Great!”Helaughed,seeingmypupilsandtookmeoffthemedimmediately.Anothermedgavemesoaringnightmares.TheycouldhaverivaledtheRomantics’nightofdrugsandstorieslikeFrankenstein,butIwantedmysleepback,wantedtowakenormally,withoutgasping.

Onemedworks,andyes,mypupilsarenormal.It’snotprescribedtohelpwiththedizzinesswithdriving,butit’smadethatgoaway.Mystudents,thecatsneedingfeeding,myhusbandgettingmeoffthecouch,althoughhecansometimeslookasimpatientasmyspirit.Thememoryofbeingtheoldestandtakingcareofthingswhenhismotherhadcancerisn’tagoodone.Icatchhimcheckingmybreathing.

Andahorsebearsmyweight,theinstructortellingmelastweekwelookedgood—allthreeofus—graceful.”


Missingsince2013:JandaK.

“IhadjustreturnedfromtravelinginMarch2013whenIcamedownwithwhatfeltliketheflu.Afterthreeweeksinbed,unabletoevensitupmostdays,Ithoughtitmightbemono.Testsrevealedwewereclose:Cytomegalovirus,whichisavirusinthemono/EpsteinBarrfamily.WhileIseemedtorecoversomewhatbyApril,Imanagedtodragmyselfthroughthemotionsofworkthroughthesummer,butbySeptemberitwasclearthatmyrecoverywasgoingbackwards.Iwasgivenadiagnosisof"PostViralSyndrome"andtoldbymyinfectiousdiseasedoctorthatsomepeoplearejust“neverthesame.”(What!?)

Stillunabletogetoutofbed,mycareercametoagrindinghalt.Mysocialandfamilyactivitiesstoppedcompletely.

Myhusbandbecamesolecaregivertoourtwoyoungsons.Ispentthenext18monthslyinginadarkroom,sleeping,unabletoevenmovemylimbssomedays,strugglingwithdisjointedthoughtsandconfusion,whatIwouldlaterheardescribedasbrainfog,butdoesn'tcomeclosetoexplainingwhatitisorhowitfeels.

Therearemomentsofthedaywherethingsfeelalmostnormalforanhourortwo—whereIamlucidandmythoughtsfollowanormalandclearsuccession—butthenthatdeterioratesintoajumbled,chaoticmessofdisjointedthoughtsthatdon'tfollowclearlogicorunderstanding.Istruggletofollowsimplecurrentevents,plotsofTVshowsorstoriesthatfamilyandfriendsshare.Ijustdon'tfollowtheconversation.It’slikecobwebsthatslowdownyoursynapsessothatitfeelslikethe"GetSmart"doorsslammingdowninyourbrain.Nothingisgettingthrough.

Year2ofmyillnessIstillprimarilyspendmydaysinbed.AtleastIamoutofmypajamasnow,butnotmuchelsehaschanged.IgaveupmycareerinPR,gaveupvolunteeringinmykids’classrooms,gaveupsocializingandtraveling.I'vehadtositonthesidelinesandwatchmyfriendscelebratetheirbirthdayswhileIamtoosicktojoinin.I'vemissedtoomanyfamilyadventurestocount.

"Fatigue"isanotherwordthatjustdoesn'tfitthebill.ItfeelslikeIhaveleadinmyveins.SometimesIcan'tspeak;itrequirestoomuchenergy.Thatisn't"fatigue."Thereisjustnothing“inthetank”tofuelstandinguportalking.MysonaskedmetheotherdaywhatIdid"beforeyouweresick",anditbrokemyhearttorealizehemaynevergettoseewhoIwasbeforethisillnessrewrotemylife.”


Missing:SeanS.“Illnesshasunraveledme.Ihavelostnearlyeverything.Yet,Iamoneoftheluckyones.Mostofmy20sIhadlittleenergyforfamily,friends,hobbies,relationships,educationorcareerflexibility.Andyet,whileIamstillgrievingwatchinglifepassmeby,IcontinuetobereinvigoratedandhealedonlybywhatIcandescribeaspuregrace.

Copingwiththestigmaofaninvisible,misunderstoodillnesshasgiftedmewithanourishingconnectiontoself,soulandplanetandaferociouscompassionforalllife.

Myearliestmemoryofbeingdifferentisnothavingtheenergytorunandhollerontheplaygroundlikeotherkids.Socially,delayedcognitiveprocessingandADD‐likebrainfog

madeadolescenceexcruciating.Igrewupplayingoutsideinahazeofpesticidessprayedonthecornfieldsaroundmyhouse.

ATypeApersonality,Ipushedthrough.IwentintodeepdenialinhighschoolwhenmybloodpressureandadrenalfatiguewassobadIwouldblackoutstandinguptooquicklyorclosemyeyestorestwhenwalkingdownthehalls.Ialmostdidn’tmakethelastfewmonthsofhighschooleventhoughIamassedachievementsamilelong.

ItwasincollegethatIcompletelylostcontrol.LifefeltlikeadeathmatchgameshowIcouldnotwin.Cyclingthroughseverestomachpain,exercise‐inducedblackouts,musclepain,amnesia,neuropathy,insomnia,nauseaanddepressionwasthenorm.Ishouldhavedroppedout.Chronicallyflu‐like,Iblamedmyself.Ichosetohideandovercompensateandgraduatedwithhonors.

Ihadaburstofalmost‐normalenergyfollowedbyanotherdecline,andthiscyclecontinueduntilIwashouseboundonandoffforyearsandthensixmonthsstraightin2013.Atonepoint,mydepressionbecamesevere,andIwasfightingforareasonto"behere."

WhileIstillexperiencerelapseanddowncycles,IamnowhealthieratacorelevelthanIhaveeverbeen.Afteralifetimeofillness,Ihavemadea65percentrecoverybyengagingintherapiestohealCNSdysfunction,naturopathy,somaticwork,andmostimportantly,takingupastrictdietofrebelliousself‐loveandself‐advocacy.

Iamnowsuccessfullyself‐employedhelpingothersreckonwithchronicillness.

Iwouldn’tchangetheagonizingsoullessonsthathavebroughtmehereforathousandcarefreeyearsinthesun.Littlebylittle,asIletgoandlistentothewhisperingsofguidancewithin,IamregainingmorethanIcouldhaveeverlost.Iamunspeakablyblessed.”


Missing:BeckyW.

“IamamajordisappointmenttoeveryoneIknow.Iamaworthlesshumanbeing.Myexistencehasnomeaning.Why?BecauseFibromyalgia,ChronicFatigueSyndromeandchronicmigraineshaverobbedmylifeofanymeaningiteverhad.

I'mmarriedandhavefivechildren.Myinteractionswiththemconsistmainlyofwhentheystopbymybedroomtoseeme.Myhusbandhastowaitonme.Ourrelationshiphaslostallintimacy.Wemerely

coexist.

MycareerendedwhenIcouldnolongermakeitthroughadayintheclassroom.Teachingwasmypassion.Itrewardedmeinwaysthatareindescribable.IreceivedawardsandwasrecognizedbyourgovernorforthecompassionIputintomyteaching.Whenastudententeredmyroom,theywerenotonlymystudent,butmychild.Itaught,encouraged,counseled,listenedandmostofallletthemknowtherewassomeoneintheirlifethatcared.

WhatrewardsdoIgetnow?Havingenoughenergytotakeashower.Seeingmychildrendowellinspiteoftheircircumstancesathome.

Pain,exhaustion,andmostofallincrediblelonelinessisallIknow.I'velostmyfriends.TheystoppedcallingwhenIkeptcanceling.Ican’ttellyouhowmanytimesI'vebeentold,“well,youlookallright”.Theseareinvisibleillnessesthatneedtoberecognized.Notsweptundertherug.

Mypoorfamilylosttheirmother.Ifeelsoguiltytoburdenthem.Theycertainlydidn'taskforthiseither.ThesadnessanddespairIfeelisalltheysee.Happiness?It'safondmemory.Icryeveryday.IcryforthepersonIusedtobeandsodesperatelywanttobeagain.”


Missingsince1988:TracyB.“IreceivedmyfirstflushotbackinNovember1988inSanDiego,Calif.Afterthat,itjustseemedlikeIwassickallthetimewithsomething.Iwasstressedatmyjobontopofthat.ThenafriendofminefoundagooddealonflightstoEuropeforthefollowingspring.IkepthopingtogetbetterfromallthesesicknessesIwasincurringbythetimeAprilcame.Ihadastomachbugaswewereflyingoverthere.Ipushedmyselftobackpackgoingfromhosteltohostel.

WhenIreturnedbacktoworkmybodyjustcrashedandIwasbedriddenforaweek.Iworked,butneverfeltgood,anditwasahugestruggledaytoday.Iwentfromdoctortodoctortryingtofindoutwhatwaswrongwithme.FinallyonedoctorsaidIhadChronicFatigueSyndrome.MylabswerepositiveforEpstein‐Barrvirus.Igotalittlebetterbutneverfullyrecoveredfromthesymptomsofaflu‐likeillness.Twenty‐fouryearslaterIstillsuffer.

Istayedinanunhappymarriage,sothatIdidn'thavetoworkandthatIcouldraiseourtwodaughters.Ahugechallenge!NowIamdivorcedandworkingpart‐timeintheschoolcafeteria,whichhasbecomeverydifficultlatelyasIhavebeenhavingheartexertion,painandpalpitations.Iamonabetablockernow,butthefatigueandsickfeelingisstilloverwhelming.

I'mafraidIhavetofinallysubmittothischronicillnessandapplyfordisabilityifImakeitthatfar.Itrulyjustwanttomakeittomydaughter'shighschoolgraduationin4years.Alltheseyearshavebeenjustplainscary.Yes,I'vebeenthroughthefriendsnotbelievingmething,sayingit'sallinmyheadtolosingjobsallbecauseofit.EverypersonIencounterinmylife,Ithinktomyself,theyaresoluckynottohavethis!Thankallofyouworkingtowardacauseandcure.”


Missingsince2009:TatianaA.

“Ialwayswashealthy,Ifeltprettyandhappywithalotofenergyplans.WhenIcametoUSfromCuba15yearsago,Iwantedtogettheworldformyself.IwantedtoenjoythelifeIwaspursuing.Iworkedveryhard,tryingtofitwithinthisnewcountryandIfeelIgotit!!However,aboutsevenyearsago,IstartedfeelingtiredandaftermanydoctorvisitsandlabtestscompletelynegativeIendedwithadiagnosisofdepression.Evenmyhusbandandfamilymembersdidn’tbelieveIwassick.

Itwasveryfrustratingandsometimeshumiliatingandmisunderstood.Mylifechangedfromshininggoldtowetcharcoal,fromwhitetoblack,nomore

happiness,cannotenjoymyson'sactivities,Ihadtoquitwork,andithasaffectedallmydreamsandmylife.Ialwayssaid"IamnotillbecauseIamdepressed,IfeeldepressedbecauseIamill."Now,ImostlyliveconfinedtomyhousewiththeterriblesensationthatsoonIwillbealsoconfinedtobed.

Itseemsnobodycouldunderstand,atsomemomentIbelievethateverythingwasinmyimaginationandwenttothepsychiatrist,yetthingswereworst.Ialsoconsideredsuicide,butdecidedtofightforwhatIconsideredbest:HOPE.

Recently,atFloridaNOVASEcenterfortheimmunediseases,theyfoundrealevidencethatmyimmunesystemisworkingwrong,mypainandgeneralillnessisREAL,notimaginary.Previously,IsawmanydoctorsandspecialistswhotoldmeCFS/MEdoesnotexist,"Itisanamegivenwhennobodycantellyouwhatyouhave."Whateverthenameis,itisREAL,andweneedhelp.

HereatUS,familydoctorsarenotpreparedforthissituation,theydon'tknowaboutthissicknessandthen,theycannotdiagnoseit.Weneedtofightforfundingforresearchandsupportfrommediaandpress.Weneedtofightfortheinsurancetocoverthetreatmentevenifitisnotadefinitivecurebecausebeingignoredandisolatedisthemostterriblethingahumanbeingcanface.

Ignoranceisobscurity,weneedhelpfromourfamily,friends,doctorsandcommunitytobeabletofloatwhileacureisfound.Iwanttobehappyagain.”


Missing:SueC.

“BeforeCFS,Iwasanoutdoorgirlwholovedwalkinginthemountains,swimming,gardening,cycling,anddancing.Istillam;Ijustcan'tdothosethingsmuchanymore.

Isanginchoirs,playedthepianoandwasverysociable.IhadjustdoneaMaster’sdegreeinwriting,seenmyfirstgrandchildborn,andrebuiltourhomeafteranearthquake.Iwas58.

IamsogratefulthatIhadthose58years.Grateful,too,thatIwasneverbedboundformorethanaweekatatime.

NowIliveinawaythatnoonewithoutCFScanunderstand.Eachday,thereisaverylimitedamount

ofenergyavailable—sometimesmore,sometimesless.Ifindcreativewaystoenjoythemostsatisfyinglifepossible,whilsttryingnevertooverspendenergy.IknowifIdooverspend,Iruntheriskofbeingbed‐boundforaweek,amonthoryears.Thereisnoeasywayback.

Iliveinfive‐minuteportions.IdothingsIloveforfiveminutes,orthreeminutes,oroneminute.Idojobsinfive‐minutestages.Irestinbetween.Iplaywithgrandchildrenfor10minutes.Idriveupthemountainandwalkforthreeminutes.Idooutdoorjobsongooddays.Inpublicbuildings,Isitandclosemyeyesandcovermyearsforfiveminutes—orevenlieonthefloortorecover.

Iamgettingbetter.ButIcanneverplanmyenergyinadvance.SoIcanrarelybewithpeople.

Igetillindoorsfrommildchemicalhousecleaners,damp,mold,carpets,perfumes.Igetilloutdoorsfromrottingvegetationafterrain,fromwind,pines,seabreezes.

Igetillfromnoise,loudvoices,machines,music,vibrationincars;fromtalkingandfromlisteningtopeopletalk;fromstrongsunlightandelectronicsignals.

CFS,byitsverynature,makesforatotallysolitarylifewithtrulymassivelimitations.It'sslower.It'sboring.It'swithoutmuchhope.Itcallsforhugereservesofspiritualstrength,self‐compassionandoptimismatatimewhenthebrainisoftenfuzzedupwithfog,andthebodyiscryingoutforhealing.

Weoftencan'tevensocializewith,ortalktoorphoneeachother,aslowenergyandbrainfoglimitallthosewaysofcommunication.Andyet,wecontinueincompleteintelligenceandavidinterestinlifefromthesidelines.


Missing:CherylB.

“ME/CFSisaninvisibledisability.Whenyoulookatme,youwon'tseemybrokenaerobicmetabolismthathascostmemymusclestrength,flexibilityandendurance.Youwon'tseethattakingashowerorpreparingasimplemealcausesmetoexceedmyanaerobicthreshold,creatinglacticacidbuild‐up,exhaustionandpain.

Youwon'tseehowmysleepisdisruptedeverynight,restlessandunrefreshing.Youwon'tseethechronicanddebilitatingmuscleandjointpain,headaches,sorethroat.Ortheintolerancetonoise,brightlights,chemicalsandfoodsthatwereeasilytoleratedbeforeME/CFS.Youwon'tseemylostsenseofproductivity,accomplishmentandcontributionthatIgotfromcareerthatIlovedandwassomuchofmyidentity.Ormylostsenseofconnectionwithothersbecausesocializingexceedsmyenergylimits.OrthatIcannolongerbecountedontohelpfamilyorfriendsinneed,orbeanequalpartnerandcompaniontomyhusband.Youcan'tseemyuncertaintyaboutthefuture.Youcan'tseemyheartyearningtolivefully,whilemybodyandbraindeteriorate.Butit'sreal,andit'smyME/CFSstory.”


Missingsince2010:JeanB.“ME/CFSstartedsixyearsago,afterIwaspoisonedwhenmyhousewastreatedfortermites.Iwassosickandalmostdiedfromit.Igotbetterfromthatafterfeelingreallyawfulforamonth,butIcouldn'tdomuchandhadalotofinfections.IhadtoquitworkingatthestorewhereIwasemployed.Ihavehadtolimitmyactivitiesgreatly.

Myhusbandismyonlyfinancialsupport.IwenttomedicaldoctorswhenIfirstgotsick,butIdidn'tgetmuchhelp…Iwastoldtogoseeashrink.Myonlyhelphasbeenmychiropractor

andadoctorthatdoescomprehensiveandintegrativemedicineandsomeresearchonmyown.Insurancedoesn'tcoveranythingthatIhavefoundtobehelpful!Itisaveryfrustratingdiseasewhichstealsawayyourlife.Italsocostsussomuchmoneyindoctorvisitsandtests.Ihavegooddaysandbaddaysandgoodweeksandchallengingweekswiththisdisease.IamabletofunctionathomeanddomostthingsIneedtodo,butanythingthatcausesmealotofstressandpushesmebeyondmystrengthtodoitwillputmedownforafewdays.Idon'thavemanyactivitiesoutsidemyhome.

AtfirstwhenIgotsickIhadtobeinbedandhadnoenergytotakecareofmyselfandevenshoweringorfixingamealwasveryhardtodo.BeforeIgotsick,Iexercisedeverydayforonetotwohours.Idon'thavetheenergyanymoretoexercisesomybodyisgettingmoreunhealthyandoutofshape.Iamgettingmoreinjuriesfrommylackofexercising.Iexperiencealotofheartpressureandtightness.Ihavegonethroughmanytestsonmyheartandnothingshowsup.IhavealsobeentotheERafewtimes.Itryandeatveryhealthy.Ialsotryanddothingsthatkeepmymindoccupied.Ihavefoundmeditationhelpful,andservingothersasmuchasIfeelabletodomakesmefeelhappierandtakesmymindoffofmyhealthchallenges.”


Missingsincechildhood:JennaM.

“IwasdiagnosedwithCFIDS/Fibromyalgiaatage14.Iwentfromdancingfivedaysaweekandcheerleadingtobeingnearlybedriddenforacouplemonths.I'msofortunatetohavefoundafewdiamonddoctorsandIamsomuchbetternow,fiveyearslater.It'sdefinitelystillastrugglesomedays,andIpushmyselfprobablyharderthanIshould,butthat'sjustwhoIam.

Inowattendauniversityandhavebeendoingverywell.Myfatigueisminimal,andtheworstthingsthatactuparemytriggerpoints,

currentlymyhandsandwrists.ButIhavecomesofar.Besidesbeingafull‐timestudent,Iworkinchildcare(whichIabsolutelylove!),workforaprincesscompany(oneofthebestjobsever),andmodel(alsoawesome).Ialsodedicateasmuchtimeaspossibletogivingbacktoothers:IrunmyownserviceeventsandvolunteerwhenIcan.

Ofcoursewithmybusylife,Isometimesgetveryanxiousoroverexertmyselfandhavetotakeastepback,butIaccept(mostofthetime)thatmybodyisnotlikeotherbodies.OtherpeoplemightnotseenorunderstandwhatIamgoingthrough,butthat'sok;theydon'thaveto.OneofmybiggestsourcesofprideishowstrongIhavestayedthroughoutthiswholeprocess.

IfeellikemylifechangedoverthecourseofadaywhenIfirsthadaboutofCFS,leavingmenearlybedriddenformonths.Mybodyhasnotbeenthesamesince.Andit'shard.Ican'tdoeverythingIwant.ButIdoeverythingthatIcan.Ihaveneverletmyillnessgetthebetterofme.Idomybesttokeepmyheadupandkeepapositiveattitude,remindingmyselfthatmyrelapseswillpass,andsomedaysarejustnotasgoodasothers.

Iacknowledgemyillnessbutdonotallowmyselftobesick;sicknessisamindsetthatIwithstandfromaccepting.CFS/FMwillalwaysbeapartofmylife,andIconstantlyhavetoworkaroundthem,butthey'renotstoppingme.


Missingsince1983:SuzyDeeD.

“Ifellillin1982afteraboutofglandularfever.Iwas15yearsoldandlittledidIknowthatthefutureIhadplannedinmymindwasnowirrevocablychanged.

Itriedsohardtoconformtowhatmyschoolwanted,Iwasaccusedofmalingering.Iwassenttoapsychiatrist.Idoubtedmyself,butmywonderfulparentsneverdid.

Ieventuallyleftschool,lostmostofmyfriendsandalongwithitahugechunkofmyself‐esteem.SonowIwasill,lonelyandgettingdepressed.Yes,depressionsispartofthisillnessbutripa16‐year‐oldlifeapartandtrynottobealittlesadaboutit.

Ihappilymetacaringyoungmanwhosemumhadlong‐termhealthissueswhocouldseethemebeyondmyME,hereweare31yearslater.Hehasbeenmyrock,mysalvation,myfriend,mylover,receptacleofallmyangerandfrustrationbutnever,evermydetractor.

Ididgetbetter(Iusethattermlightly)Imanagedtoconformtosociety'srules.Iwenttoeveningclasses.Ifoundajob.Ilivedanoutwardlynormallife.Whattherestoftheworlddidn'tseewasthegirlwhowasinbedby8everynight,whosleptmuchoftheweekendalltoenablehertodothe9‐5thingthatwearesupposed(!)todo.DidIhaveabalancedwork/life?Hellno,butwhatelsedoyoudoinaworldwhodoesn'tbelieveyouaresick?!

Ieventuallywentparttimeatworkbecausewewantedtogetpregnantandmytiredbodyjustwouldn'tcooperatewhilstIwasworkingtothepointofconstantexhaustion.I'mdelightedtosaythatin1996Ihadababy,buthowmanymumshavetolettheirthreeweekoldgotostayattheirownmum'shouseonenightaweeksothatthistiredandhurtingbodycouldsleepandrecover?Myrealityversusyours.

Myhealthhashadupsanddownsovertheensuingyearsbutafteraboutofswinefluin2010it'sbeenonthedeclineagain.Ihadtogiveupmylittleparttimejob‐awholeeighthoursaweek‐becauseIwasjustexhaustedandfeelingillallthetime.

PacingismymiddlenamebuttheenergyenvelopewithwhichIcanjuggleisgettingsmallerandasaconsequencemyconcernovermyfutureisgrowing.ThereisnothingIcandotochangeit,maybeonedaytherewillbeabettertreatmentthanthatthatlieswithinourownhands.Wepace,weboomandbustjustsowecanhavemomentsofsnatchednormality.IknowthepriceIhavetopayandsometimesit'sworthit.”


Missingsince1983:PhilC.

“In1983,at22yearsold,Iwasdiagnosedwithspondylolysisandspent11monthsinabackbrace.Afterafewmonths,Ibeganhavingboutsoffever,sorethroat,diarrhea,bronchialandsinusinfection.Becausethebackbracelimitedmyphysicalactivity,mydoctorsbelievedthistobesomeformofmetabolic/immunesystemadjustmenttoamoresedentarylifestyle.

Afterayear,itwasevidentthatnosuchadjustmentwasgoingtohappen.Iwasspendingaboutaweekofeverymonthbedriddenandmostofmyremainingtime

managingintensemusclepain,fatigueandbrainfog.Iconsulteddozensofhealthproviderstonoavail.ManyweretroubledbytheirinabilitytounderstandwhyIwasexperiencingthesesymptoms.Someweredismissive.OneexplainedthatIwasmalingeringandreferredmetoapsychiatrist.In1987,IwasdiagnosedwithChronicFatigueImmuneDysfunctionSyndrome(CFIDS)byDr.AnthonyKomaroff.

IservedaslibrarianandtelephonecounselorfortheMassachusettsCFIDSAssociationforseveralyearsfollowingmydiagnosis.Icontinuedtoworkfull‐time,marriedandhadchildren,strugglingconstantlytomanagetheeffectsofmysymptomsonourfamilylifeandinmywork.Welivedthroughhundredsofcrashes,madeaccommodationsineveryaspectofourlivesandsimplytrudgedthroughthedaytoday,fightingoffthedespairforlackofanyeffectivetreatment.Between1998and2000,mysymptomsbecamemilderandtheneedforbedrestlessfrequent.Eventually,myfamilyandIbegantotalkabouttheillnessinthepasttense.Bewilderedyetgrateful,itwouldremainamysteryhow,after17years,itjustwentaway.

Twelveyearslater,in2012,itreturnedfollowingaboutofpneumonia.Nowin2015,at55yearsold,thephysicalandcognitivechallengesaremoredebilitatingthantheywereinmyyouth.Iamabletoworkonlyparttime..I'vestoppedallcommunityandsocialactivity.Mywife,whohasretired,spendsmostofhertimemanagingourfamilyaffairsandhelpingmemanagemymedicalcare.Iamfortunatetohaveateamofhealthcareprovidersthatcommunicatewithoneanotherandarecommittedtomycare.Theresearchofthepastdecadehashelpedmeidentifypromisingoptionsforsymptomreliefandtopursuediagnosticandtreatmentmethodsaccordingly.Thishasbeenexpensiveandarduous,buthashelpedmetoremainfunctionalandoptimistic.


Missing: RonaL.

“Itwasduringmymid‐20sthatIbecameunwell.ME/CFSwasmyinitialdiagnosis—muchtomysurprise.Ididn'tbelieveinthediagnosissoignoreditandcarriedonwithlife.Myhealthdeterioratedovertime,thoughIcontinuedwithallmyusualtasks.Atage28,theglandsswelledupthroughoutmybody,andthedoctorthoughtImighthaveglandularfever.Iwasusedtoignoringsymptomsatthispoint,andonlywenttoseethedoctorbecausemyrightthighhadswelledupsomuchitcouldn'tfitinmypantsanylonger.Withinweeks,Iwasflattenedandseriousunwell.

Firstly,Iwasdiagnosedwithoveractivethyroid,butmylevelsreturnedtonormalunusuallyfast.BecauseIwas

stillseriouslyunwelldespitenormalthyroidlevels,furthertestingwascarriedout,andIwasdiagnosedwithdysautonomiaalongwiththeCFS/ME.

It'sbeennearlysixyearsandIamclassifiedaspermanentlydisablednow.Imisstheweekendadventureswithmyhusbandanddaughter.Takingwalks.Beingabletogooutbymyself—andbeingabletogooutwhenIchooseorneedto.SoonIwillhavebeendisabledforhalfofmydaughter'slife.Thereweresomanyadventuresforustosharethatwillneverhappen.That'sthethingaboutthisillness.Wegetstuck,almostinstasis...buttimemarchesrelentlesslyon.Childrengrowup;childrenwemighthavedreamedofareneverborn.Marriagesandpartnershipsarechangedforever.Sometimes,webecomepeoplewedon'trecognize.Whoisthisdisabledperson?Istillfeelpropelled,internally.Iamstilldriventolivemylife,togetoutintheworld.

Onlyinmorerecenttimes,afterafortuitousstabilizationofmysymptoms(nohospitalizationsforabouttwoyears—whoopwhoop!)haveIbeenabletoseethevalueinmylifeoncemore.I'vestartedreadingagain(difficult,butpracticeispayingoff).Ifoundacoursetostudyathome,andtheteacherevenvisitsmehere.BecauseIcannolongergetuptoplaythepianowithease,IdidwhatIneverthoughtI'ddo;I'mlearningastringinstrument‐‐theukulele.I'vehearditsaidthatapersoncanneverbesadwhilstplayingtheukulele.I'vemanageditonce—butmostly,I'dsaythisassertionistrue.

Thereisalotofliving,learningandlovingleftformetodo.IhopethatifIeverbecomeextremelyunwellagain,I'llkeepbelievingthat.ButIjustdon'tknow.Atmyworst,theGPsaidmineisoneofthecruelestillnessesshe'severseen.Lifeexcitesme,though.Ienjoymyresponsibilitiesandworkingtowardgoals.Pleasehelpusescapetheconfinesofthisillness.


Missingsince2008:ChrisW.

“IbecameillwithME/CFSafteranacute,viral,flu‐likeillnesseightyearsago.Iwas56yearsoldandhadaresponsiblepositioninthefederalgovernment.Withaccommodationsfrommyemployer,Iwasabletoworkfor2‐1/2moreyearsuntilIwaseligibletoretire.But—Ihad

tostoptraveling,eliminatepublicspeaking,workfromhomefrequentlyandreducemyworkloadinordertoremainemployed.

Inthefouryearssincemyretirement,myhealthhasgottenworse.MyPost‐ExertionalFatigueputsseverelimitsonmyphysicalandcognitiveactivities.Ididnotexpecttospendmy60slyingonthecouch.

MyfriendsarefullyengagedinactiveliveswhileIamonthesidelinesfeelingsickmostofthetimewithswollenglands,headache,sorethroat—it’slikehavingtheflu24/7.

Iwantsomeeffectivetreatmentsinmylifetime.”


Missingsince2013:PeterY.

IcamedownwithwhatIthoughtwasthefluinFebruaryof2013.Ineverreallyrecoveredfromitthough,feelingtiredandhavingfrequentheadachesandjointpains.

AtfirstItriedexercisingmore,eatingbetterandgettingmoresunlight,alltonoeffect.InAprilofthatyear,Ifinallywenttothedoctoraboutit.

Longstoryshort,afterseeingseveralhealthcareprofessionalsandbeingprescribedtheusualdrugssuchassteroids,antidepressants,antibiotics,etc.,nothinghelped.IhadmorebloodteststhanIcanremember,asleepstudy,X‐rays,fullbodyscan;alltheycouldfindwashightitersofEpstein‐Barrandaslightlyelevatedwhitebloodcount.Finally,aftersometwoyearsofthis,myrheumatologistdiagnosedCFS.

Iamnowondisability.Ihavetriedallthevarioussupplementsandvitaminsthatpeoplementiononblogsandwebsites,toonumeroustoaccounthere,andnonehelped.Iamencouragedbythestoriesofthosewhohavegottenbetterorimproved,andequallydiscouragedbythestoriesofthosewhohaven't.

Itrynowtoeathealthy,napasneeded,andpacemyself.Minimizingstressisimportantaswell.OnedayatatimeishowIhavetolivenow,andIhopeforthefuturetobedifferent.Igotsickattheageof52,andIamgratefulthatthisdidn'thappenearlierinmylife.”


Missing:ElisabethR.“IgotMEwhenIwas15afteraMeningococcalBvaccinetrialinNorway.(Thereareover300peopleinNorwaythathavenowcomeforwardaboutgettingMEafterreceivingthisvaccine).

Iwasaverysportykid,butafterIgotthevaccine,Iwasunabletoattendanysportorschool.Igot

continuallyworse,butnodoctorbelievedmetobeill.

Ittookme15yearsandachangeofcountrytogetadiagnosis,byaverywell‐knowndoctorwhoknowsthisillnesswell:DrRosamundVallingsinNewZealand.Shegavemeallthelatestinformationandgreatsupport.

Iamstillfightingformydiagnosistoberespectedandtogettreatmentinthemedicalandsocialfield24yearsoninNorway.

Seriousbiomedicalresearchisparamount.”


Missing:JillM.

“AdiseasecalledTTPbeganmydescentintotheworldofSEID.In1998,IwashospitalizedforovertwomonthswithTTP.Iwouldhave13bagsofplasmaexchangedthroughmybodydailyinanefforttoputthediseaseinremission.Icameoutofthatwithconstantfatigue,swollenglandsandsensitivitytostress,lightandnoiseandafoggybrainthatbeganinterruptingmywork.AlthoughIhadamildcaseofSEID,Ireallydidn'tknoworunderstandwhatwashappening.EverydoctorIsawhadnothingtosay.

In2006,IcamedownwithValleyFever,anditwreakedhavoconmyendocrinesystem,givingmemythirdauto‐immunediseasecalledSchmidtsSyndrome.ThisgavemethemoremoderatecaseofSEIDwithepisodesofsevere.Ilostmyhealth,mycareer,myrelationshipandhadtoleavemyhomeof35yearstobenearmyfamilyforsupport.IamdisabledfromSEID,CFIDS,ME.Itdoesn'tmatterwhatyoucallit,itremainsadebilitatingandseverelyisolatingdisease.Itislongpastduethatthewholemedicalcommunityandgovernmentacknowledgethisdiseaseforwhatitis.

PriortothesedevastatingdiseasesandthepermanentSEID,Iwasahealthy,hard‐working,vivaciousindividual.Ilovedlife.AlthoughIstilllovelifeandamgratefulforwhatIhaveandwhatIcandoonagoodday,Istillgrievethelossoflife.Ialsogrievethelackoffundingandtheignoranceofthenumerousdoctorsthathavetraumatizedmewithalackofvalidationandcareorawillingnesstolookintothisdisease.

OnadailybasisIstrugglewithdebilitatingfatigueandjointpain.IhavetousewhatenergyIhavelikeacommodity.SomedaysItradeshowersfordoingmydishesorvisitingfamilyorfriends.SomeweeksarespentinbedrecoveringfromPEM.SomedaysIcanshopandhangoutwithmyfamilybutIalways,alwaysendupbackinbedwithPEM.Thesmallestofthingscantrigger—noise,smell,light,talking.Sometimesit’sasensoryoverload,whichisanewsymptomthisyear.WhatImaybeabletodoonedayleavesmeobliteratedthenext.”


Missingsince2013:KatherineS.

“OnFeb.5,2013,IbegantonoticethatIwasfeelingunusuallytired.Iwasafit,healthy21‐year‐old.Withindays,IdevelopedwhatIthoughtwasanordinaryviralinfection,albeitaparticularlynastyone.Mywholebodywasinpain,mythroatwassoreandswollen,andIcouldbarelykeepmyeyesopen.Iexpectedtobebetterinafewdays,aweekatmost,butafewweekslater,Iwasnobetter,andabloodtestconfirmedglandularfever.Iwasinmyfinalyearofuniversityatthetime.

Overthecomingweeks,theworstsymptomsfaded,butIwasstillexhausted,barelyabletowalkwithoutfeelingfaint,andmyheadfeltlikeitwasfilledwithsludge.Ibattledthroughandfinishedmydegree,evenacceptedajoboffer,notevenconsideringthatrecoverywasnoton

theway.Istruggledatwork,andafterafulldayintheofficeIwouldcollapseathome,sometimesjustaboutmanagingtofeedmyselfanddoafewbasictasks.Othertimes,Iwouldjustsleepuntilitwastimetogobacktoworkinthemorning.IfeltlikeIhadnolife.SeveraltimesIwenttomyGPabouthowtiredIwasfeeling,andwasrepeatedlytoldtocomebackifitdidn’tgetbetter.Bloodtestsallcamebacknormal.

MorethanayearhadpassedwhenIdecidedtogobacktouniversity.Ifeltdesperatelyunhappyinmyjob.Icontinuedtostrugglethere,andthedoctorsIsawdecidedIwassimply“depressed.”WhenItriedtoinsistthatmymoodwaslowbecauseIwassotiredthatIcouldn’tdoanythingIwantedtodo,oneeventoldmeIwas“indenial.”IwasintearsbecauseIfeltlikenoonebelievedme,whichonlyseemedtoconfirmtheirassumptions.Theydidn’tseemtounderstandthatIhadplentyofmotivationandenthusiasmforlife(unlikeadepressedperson),Ijustdidn’thavetheenergy.Iwasputonantidepressants,whichnotonlyfailedtotreatmyfatigue,butcausedallkindsofunpleasantsideeffects.

ItwasonlyduetoluckthatIfinallyreceivedhelp.Adoctornewtomerecognizedwhatshewasseeing,andreferredmetothespecialistchronicfatigueservice.Twoandahalfyearsafterbecomingill,Ireceivedadiagnosis.Youwouldn’tthinkbeingdiagnosedwithadebilitatingchronicillnesscouldbeagoodthing,butitwasarelieftofinallyfeellikeIhadbeenunderstood.Adiagnosishasn’tbeentheendofmystruggles,butit’sbeensolongnowthatIhavelearnedhowtopacemyself,limitmyactivitiestoasustainablelevelandcometotermswithlivingthisway.

IamhopefulthatIwillyetrecover.”


Missingsince1971:MaryannR.

“IhavebeenthefaceofME/CFSforover45years.Aftergraduatingfromnursingschoolinthemid‐1960s,ImovedtoHawaii.DuringvisitstomyfamilyinIndiana,Icamedownwiththefluandmeningitis.Thatiswhenitallstarted.BythetimeImarriedin1970andsetupapermanenthomeinHawaii,this"monkey‐on‐my‐back"waswellestablished.

Intheearlyyears,therelapseswereonlytwotothreetimesayear.Theoverwhelmingfatigueandmalaisewouldabate,andliferesumedinanormalway.Butovertheyears,thesymptomscamemorefrequently,lastedlongerandcouldbetriggeredby

evenminimalexertion.Duringexacerbations,Ihavealwaysfeltexactlythesamesincedayone.Theonlyvariabletothefatigueandmalaiseistheseverity:sometimesmild,sometimessevereandeverythinginbetween.

Thestoryofmysearchislikeeveryoneelse's—dozensofdoctors,hundredsofappointments.Thesameoldrefrains:"Well,it'snotkillingyou,"or,"Ifit'sserious,somethingelsewillshowup,"orthemostrepeated,"Areyoudepressed?"Iwaitedpatientlyovertheyears,stillam.Ikeepabreastoftheresearchandinformationthatisknownsofar.AndasIenterintomyseventhdecadeoflife,Icontemplateifthecauseandcurewilleverbeknowninmylifetime.

ME/CSFresultedinabandoningmyprofessionalgoalsofcareeradvancement,obtainingadegreeandworkingfulltime.Iwasforcedtoretireatage62.Mymarriageendedafter40years,andalthoughmyillnesswasnotthecause,I'llneverknowhowmuchitplayedintothedisintegrationoftherelationship.

Ithasseverelylimitedmysociallife.Itcausesthedisappointmentandembarrassmentofyetanothercancellation.DoImakethecommitment,theplans,thereservations,knowingfullwellthatthereisaverygoodchancethatIwillhavetocancelanddisappointnotonlymyself,butthepeopletowhomI'vemadethecommitment?IfI'mlucky,Iwillbeabletoparticipateandenjoyandwillprobablyexertmyself.Butdothememoriesofthosegoodtimesoutweightheconsequencesthatmayputmeinbedforthefollowingdays,weeks,months?It'salwaysagamble.


Missingsince 2002:MelanieP.

“PriortoME/CFS,Iwasanactivemotherwholovedrunningherkids..Iworkedasapreschooldanceteacherandamotivationalspeakerandwriter.WhenIfirstgotsick,mylongtimePCPsearchedeverythingshecouldforacause.IrememberthedayIlookedinhereyesandsaid"Don'ttellmeIhaveChronicFatigueSyndrome...Idon'tbelieveinit."Itwassostigmatizedinthe80s,Iwassureitwasjustapsychologicalproblemforoverworkedpeople.

Fourteenandahalfyearslater,I’vebeentofourout‐of‐statedoctors,theMayoClinicandVanderbiltUniversity.Iamunabletowork;Irarelyleavethehouseandsometimeshaveseveraldaytimehoursinbed.Mycognitiveabilitieshavedeclinedsomuchthatevenwritingthisshortstorytookdays.Idoeverything

right.Ipace,haveasupineexerciseroutineandtreateverysymptompossible,butIcontinuetogetsicker.IfeellikeIhavethefluallofthetime,WeneedresearchforME/CFSbecauseit’stheantithesisofphysicians’knowledgeandtypicaltraining.MygastroparesisrequiresthatIeatlowfiberandstayawayfrommostfruitsandvegetables.MyPOTSrequiresahighsaltdiet,morethanIcanstomach.Botharetheoppositeof“proper”nutrition.Mybodyisintolerantofallphysicalexertion—Ifeelsomuchworse24hourslater,anditcanlastfordaysorevenweeks.Doctorsalwaystelltheirpatientstoexercise.

Mybodyissosensitivetostimulation,thatIhavetousenoisecancelingheadphones,andvisitswithgroupsofpeoplehavebecomeimpossible.Doctorswouldlabelthisanti‐social.Iamsleepyalldayandfighttonotnapaccordingto“propersleephygiene,”butintheevening,asallstimulusdecrease(lights,sound,activity),mybodybecomesmorealert,andIcan’tfallasleep.Iamnotdepressed.Onthecontrary,IamapositivepersonalwayssearchingfornewthingsIcandointhemidstofthishorribleillness.

Doctorswantmetotakeantidepressants.Doctorswantmetotakestimulantstofightthefatigue.Mybodyreactstostimulantswithnohigh,andallcrash.Theymakemesosick.Ontheotherhand,medicationsthatdepressmyANSwakemeupandmakemefeelmoreabletobeactive.Andyet,ifIdo,Icyclebacktotheexertionreaction—onlyit’sstrongerandlongerbecauseIwastrickedbythemedstobemoreactive.Everythingaboutmyillnessisoppositeofwhatdoctorsaretrainedtosayanddotohelpme.Everythingtheytellmetotrymakesmesicker.Ihavebecomeverywearyoftheirideas.Thisiswhyweneedresearch.Thethingsthisillnessdoestomybodydonotfitintoanycurrentlyunderstoodillness.”


Missingsince1995:ChrisW.

“In1995,Ibegantoexperienceadeepachinginmyforearms.ItriedtoignoreitasIwentthroughmyday,which,atthattime,wasasastay‐at‐homemomwhowashomeschoolinghertwosons.

Thethrummingpainkeptmeawakenightsforaboutthreeweeks.Shakyandsleep‐deprived,IsawarheumatologistwhodiagnosedmewithFibromyalgia.Duringthatvisit,IwouldhavethefirstofyearlyNuclearAntibodytests,whichtestforautoimmuneactivity.Thistestalwayscomesbackpositive.

JustwhenIthoughtI'dgottentheFibromyalgiaundercontrol,in2001Ilapsedintoabone‐deepfatigue,accompaniedbyflu‐likesymptoms,whichturnedouttobeMononucleosis.ThiskickedoffmyChronicFatigueSyndrome.Iwas41.Iwasinbedforthreemonths.

Mylifehasneverbeenthesamesince.I'vegonefromdoctortodoctor,onlytobetreatedsymptomaticallyforeverythingfromAcidRefluxDisease,migraines,insomnia,deepmuscleandjointpain,depressionandsoon.At50,IdeterminedthatIwouldgobacktocollegetofinishmyundergraduatedegreeinEnglish.Ididso,takingoneortwoclassesatatime.Somehow,IpushedmyselfthroughthefatigueandwasfilledwithpridewhenIwalkedacrossthestagein2012toreceivemydiploma.OnlyahandfulofpeopleknewwhatI'dgonethroughtoearnit.

Sincethen,I'velongedtoworkoutsidethehome,buthavebeenunabletoasmyCFScontinuestodominateeveryaspectofmylife.Evenso,Iamblessedwithadeeplykind,resourcefulandlovinghusband.Myfaithhelpsmeimmensely,andtheloveofmyfamilyisalsoapreciousgift.However,unlessamiracleoccurs,IfearthatlivingwiththedebilitatingfatigueandotherpainfulsymptomsofCFSwillbethethingIlivewithuntilIleavethisearth.

I'mnotsurethatanymajorscientificbreakthroughswillbemadeinmylifetime,andit'ssadtoseesolittlefederalfundinggotowardsresearch.


Missing:LisaZ.“BeforeIgotmarried,Iwasaveryactive,healthy,socialpersonwithplanstoopenmyownbusiness,getmarriedandtostartafamily.Iwasdiagnosedin1991,onlymonthsaftergettingmarried.Whenwetookourvows,weneverexpectedtohavetodealwith"theworse"partof"forbetterorworse"forquitesometime,butwehadnochoice.Itriedtocontinueworking,buthadamiscarriageandthentroubleconceiving,soIwastolditwaseitheracareerorafamily,soIchosefamily.

Ihadtwohard,complicatedpregnancies,butwasblessedwithtwohealthychildren.IwishI

could'veshownthemmystrong,energetic,hard‐working,funside.ButIwasonlyabletoshowthemmyloving,weakside...bakingforthemwhenIhadtheenergy,readingandplayinggameswiththeminside,insteadofrunningaroundandplayingwiththemoutside,andhardlyeverbeingabletohavetheminvitefriendsoverbecauseitwouldbetoomuchformetohandlewithoutextrahelp.

Istilltothisdaydon'ttalkortellmanypeoplethatIhaveME/CFSbecauseit'stoodifficulttoexplainordefend.Exceptformyimmediatefamily(andeventheydon'tunderstanditalways),Ireallydon'thaveanysupport.Idon'thaveaspecialdoctortotreatmeandhavesurvivedsolelyonpacingmyselfandtryingtoliveashealthyofalifestyleaspossible,withinmylimits.

IknowIammuchluckierthanmanypeoplewithME/CFS,Iamnotbed‐orchair‐bound,butIstillmournthelifeIcould'vehad,theincomeIcould'vehadandthefriendsthatI'velostalongthewaysinceI'vehadtoliveaveryunsociallifestyle.IamveryangrythatME/CFSisnotmorerecognizedandthatI'membarrassedtotellpeoplethatIhaveitbecauseI'mafraidofhowtheywillreactandIdon'thavetheenergyorbrainpowertoexplainanddefendmyillnesstothem.Ifonlypeople(andsomedoctors)wouldunderstandandtreatusthesameastheywouldifwetoldthemwehadMSorLupus,oranyotherrecognizedillness...”


Missing:ConnieF.“Asaformerlettercarrier,IknowthatnotgettingenoughexerciseisnotthereasonwhyIcamedownwithCFS/ME.FeelinglikeIhadthefluforweeks,thenmonths,whiledoctorskepttellingmenothingwaswrongcontinueduntilIwasledtoarheumatologistwhocoulddiagnosemeproperly.AlthoughthatsamedoctorwasabletoprescribewhatIcallmymiraclemedicineseveralyearslater,theBusparIamnowtakingregularlyhasnotcuredme.Lifeismorebearable,though,asIstruggletokeepapart‐timejobtosupplementmydisabilityincome.

SinceIhavealwaysbeensingle,Iamsolelyresponsiblefortakingcareofmyself.ThisisespeciallyhardwhenIcomedownwithseasonalcoldsorflus,seeingasIstillhavetodoallmyowngroceryshoppingandcleaning.

Itissohardtonotbejealousofotherswhohavehusbandswholetthemstayhomeinbedtotakecareofthemselves.Ioftenwishthatthislifewouldbeoveralready,asitissodifficult.ButIdohavemanyfriendsandfamilywhohelptomakeitworthlivingdaytoday.Also,thereisalwayshopethatsomedaysomeonewillfindacureduringmylifetime.Ifthathappens,Iwouldnotwanttohavemissedit!

Probablythehardestpartofmanagingthisillnessisdealingwiththeattitudesofmanyofthosearoundwhothinkyouhaveitmadeworkingpart‐time,believingthatyouarehealthyenoughtoworkfull‐time.Manytimes,Icomehomefromwork,feedmyselfsomethingfordinner,evenifitisjustcerealandcollapseforthenight.Sincepeopleonlyseemeatmybest,beingthatIonlycomeoutwhenIamfeelingwellenough,theythinkIamlikethatallday.Therealityisthatmuchofmytimeisspentrecuperatingfrombeingoutandabout.

IwasthinandinexcellenthealthwhenIbecameill.NowIamoverweightandseemtoalwaysbedealingwithsomethingattackingmyimmunesystem..Itisveryhardtokeepsmilingwhenyouneverfeelreallygood,butIcertainlydokeeptrying.Icontinuetomakeplansformyfuture,allthewhileknowingthatthoseplanscouldchangeinaheartbeatduetohowIamfaringonanygivenday.Intheend,though,isn'tthatwhatallofusmustcometogripswith?Ijusthavetodealwithitdaily.”


Missingsince1994:SusanR.

“Mystorybeginsin1994.Iwas29atthetime.Iwasamothertoabeautifuldaughterandmarriedtomyhighschoolsweetheart.IworkedfulltimeinthehealthcareindustryandinstructedaerobicclassesatthelocalYMCA.Ilovedtheoutdoors.

IawokeonemorninginAprilwithahighfever,swollenglands,chillsand"brainfog."IthoughtIhadtheflu,butitneverleft.Iwasexhaustedallthetime.FormonthsIsoughtthehelpofnumerousdoctorswhocheckedmeforeverythingfromCatScratchFevertoLupus,Lymphoma,MS,ThyroidDisease,...thelistgoeson.Needlesstosay,theyneverfiguredoutwhatwaswrong,andIwasfinallydiagnosedwithCFSin1996.Mydoctorwasuselessinhelpingmewithmysymptoms.

IhaddisabilityinsurancethatdeclinedtopaymybenefitsifIdidnotsubmittoneuropsychiatrictestingbecauseofmyCFSdiagnosis.Iwasforcedtoworkpart‐timeandgiveupmyaerobicinstructorjob.IwasultimatelydischargedfrommyemployerwhomIgave20yearsofmylifeto.

Wealmostlosteverythingweworkedsohardfor.Andtheimpactwasworseformyfamily,whodidn'tunderstandthisillness,watchedmesufferandcoulddonothingtohelpme.Thepsychologicalimpactonmewasalmostunbearable.ManypeopleIlovedquestionedmydebilitatingillness.Ifeltlikeafailureandasmydoctorsaid"well,youwon'tdiefromit."No,Ihavenotdiedfromitbutattimes,IwishedIwouldhave,evennow.

InMay2000,Isufferedart.thalamicstroke.Ihavedeficitsthataffectmyleftside.In2006,IdiscoveredapositiveLymetestperformedduringmyhospitalizationforthestrokein2000.IwasnevertreatedfortheLymeDisease.So,Ihavetwohighlycontroversialdiseases.IbelievethatwewillfindalinkbetweenCSFandachronic,untreatedviralinfection(ie:EpsteinBarrvirus,Mononucleosis,LymeDisease,etc).

Iwantpeopletounderstandthatwearenotlazy—thisisnotallinourheadsorfabricated—thisisrealandnotmadeup.Wehavesuchadifficulttimegettingthroughourday.Weneedadvocatestospeakforusbecausewearetoosicktofightandspeakforourselves.”


Missingsince2005:ParisA.

“Imaginethatyouhavetheflu.You'resoexhaustedthatwalkingfeelslikeyou'removingthroughquicksand.Yourwholebodyaches.Yourmindisfoggy,andit'shardtoconcentrateonanything.Everysysteminyourbodyisoffinsomeway—joints,muscles,brain,digestion—everything.

Eventhoughyou'renotwell,youhaveameetingtodaysoyouhavetogotowork.Youdragyourexhausted,achingbodyoutofbed,andbysomemiracleyoumanagetogettotheoffice.Alldayyoushufflealong,secretlyprayingthedaywillgofastersoyoucangohome

andgotobed.Therefreshingsleepyouneedtofeelbetterbecomesthethingyoudaydreamaboutalldaylong.Finallyyougohome.Butwhenyougettobed,youcan'tfallasleep—theultimateirony.Youliethereknowingifyoucouldonlygetsomesleepyou'dfeelsomuchbetter,knowingtomorrowyouhavetogetupanddoitallagain,andwonderinghowyou'llmanage.Nowinsteadofoneday,imaginethatisyourentirelife.Everyday.

That'smylife.It'sbeenthatwayfor11years.Mylifewentfromactive,socialandhopefultosedentary,isolatedandlonely.Somedaysarebetterthanothers.SinceIfirstgotsickIhavecomealongwaybecauseI'velearnedhowtolivewithinmyenergyenvelopeandmanagemysymptoms.

ButeverydayIamsick.EverydayIdealwithfatiguethatpullsmedown.EverydayIaminpain.EverydayImournthelifeIcouldhavehad,shouldhavehad.Myentireliferevolvesaroundthisdisease.Andtheaccompanyingdepressionmakesithardtoimaginethatitwillevergetbetter.”


Missing:TiffanyL.

“It'shardlivingwithaninvisibleillnessthatnotmanypeopleunderstand(letalonebelieve),hasnoknowncauseorcure,andnoeffectivetreatments.BeforeCFS,Ihadgiantgoals:getmyPhD,haveababy,gaintenureatmyuniversity,makeanameformyselfinmyfield,etc.IcompletedmyPhDandgavebirthtomysweetlittlegirljustbeforegettingreallysick,butI'vehadtoadjusteverythingelse.Thisdiseasehasrobbedmeoflotsofthingslikeacleanhouse,anactivesociallife,advancementinmycareer,hobbiesandmuchmore.ButI'velearnedtore‐prioritize,andI'vecometoaplaceofdeepappreciationforthethingsIcanstilldo.Iteachatauniversity,butI'mnolongerseekingtenure.ThatmeansImakealittle

lessmoneybutIhavealotofflexibilityinmyscheduleandoverallmuchlessstress.Manyofmyclassesareonline,soit'sverymanageablewiththisdisease.AndItrulylovemyjob.AndIhavemybeautifuldaughterandasweetwonderfulmanwhoisveryunderstandingandnevermakesmefeelguiltyaboutnotdoingenougharoundthehouse.Andpets!Thethreeofusareanimalloversandspendlotsoftimelivingoursweetpets.YesIhavechallenges,dailypain,heavyfatigueandawholehostofothersymptomsthathaveforcedmetoslowdowntoasnail'space,butIhavealifefulloflove.AndIamgrateful.AndIamhappy.Whenthingsgetreallyhard,Iremindmyselfto"lookforthelove."Becauseit'severywhere.Icanalwaysfinditinmychild'seyes,inawarmhug,inacat'spurr,andinmyFacebooksupportgroups.Icanfinditatmydaughter'sschoolwhenIseechildrenhuggingtheirparentsgoodbyeeachmorning.IcanfinditonTVwhenIwatchaninspiringdocumentaryorgoodindiefilm.It'sinmusicandart.Thereitisagainwhenmyneighborwavestomeandoffersakindsmile.Loveissimple,it'severywhere,andembracingitisapowerfuldefenseagainstthedarknessofthisdebilitatingdisease.Formanyyears,Iwasdepressed.Severelydepressed.DepressionisadarkandscaryplacetowhichIneverwanttoreturn.Withtherightantidepressants,theuseofmedicinalmarijuanaandfindingagoodtherapist,Iwasabletopullthrough.It'sstrangehowlifeworks.Ihatethisdisease,Ihatemychronicmigraines,andIhatedepression.Andyetit's100%becauseofthisjourneythatIhavesomuchgratitudeandloveandjoyinmyheart.I'veboileddownmyprioritiestoonlywhatisabsolutelymostimportant.Andthat'showIalwayswanttolivelife,withorwithoutchronicillness.”


Missingsince1980:BillJ.“IcamehomefromworkonDec.8,1980,feelingsickfromaflu‐likevirus.Iwasoutsickfortwoweeks,beforelimpingbacktoworkforthelastofthemonth,butneverfeltthesameagain.ByMayof1981,IdevelopedafullblowncaseofwhatlaterbecameknownasCFS.Iwasbedriddenforasolidweekuntilthedebilitatingfatigueletup.Ilaterlostmyjob,andstruggledtofindsomekindofworkIcouldstilldo,evengoingtoabusinessschoolfortraining.Afterwards,Igotajobinthecompositionroomatourdaily

newspaper,butlastedlessthantwomonthsuntilIbecametootiredtodothejobandwasletgo.Atthatpoint,IneededtoapplyforSocialSecurityDisability.First,Ihadtotrytofindoutwhatwaswrongwithmephysically.Ihadtogotoalocalcommunityhospitalclinictostartthetests,sinceIhadneithermoneynorinsurance.Astherewasnonameforthemaladyatthattime,SocialSecuritykeptturningmedown,andIhadtokeepappealingmycase.IttookfouryearsoftestinguntilIwasfinallydiagnosedwithCFS,andIcouldgetapprovedfordisability,thoughmyappealswentallthewaytotheU.S.DistrictCourtofAppeals,justshortoftheU.S.SupremeCourtlevel.

Duringthistime,Ihadtomoveinwithfriendsforayear.Afterthat,Imanagedtofindanapartmentthatwasincome‐based,andmy"income"fromwelfarewassolowthatnotonlydidInothavetopayrent,Iwouldgototheapartmentofficeeachmonthtoreceiveutilitypaymentassistance.

BeingabletofinallyqualifyforSocialSecurityDisabilitypaymentshasbeenablessing,butittookSOlongtogetthem.I'mnowgoingon62,andhaven'tworkedsincethe1980s.”


Missingsince1986:AnneB.

“IhavebeensufferingfromCFSforalmost30years.I'maloneinlifeandhavetosupportmyself,soprettymuchanyenergyIcandrumupinadayisspentonworking,withlittleornothingleftforthosethingsthatmakelifewonderful—family,friends,hobbies,love.Iusedtosewandmakemostofmyownclothes.Nomore.Iusedtoactandsingincommunitytheater,operaandbands.Nomore.Iusedtodraw.Nomore.Iusedtotakeeveningclassesinlanguages,art,andastronomy.Nomore.

MyeveningsarenowspentwatchingTV,readinganddoingpuzzles.I'mboredwithsolittlestimulation.WeekendsaretheonlytimeI'mabletodoerrandsorchores;Ihavetotriagethemverycarefully.Buyinggroceriesgetsdonebecauseithasto.Vacuumingdoesnot.Ishower(sittingdown)nomorethanonceaweek.

SinceIlookfine,peoplearereluctanttobelievethatI'msickandwilltellme,"everyonegetstired!"Theydon'tunderstand—Idon't"gettired."I'mneverNOTtired.Thinkaboutatypicaldayformostpeople:You'reupat6,makebreakfastforthefamily,getthekidsofftoschool,gotowork,takethekidstosoccer/piano/danceintheafternoon,comehomeandmakedinner,helpthekidswiththeirhomework,getthemofftobed,throwinacoupleofloadsoflaundry,andfinally,finally,fallontothecouchexhausted.Thinkabouthowyoufeelatthatpoint.That'showIfeelwhenIwakeupinthemorning,exceptnowIhavetogetthroughanentireday.

Oh,yes,I'veappliedfordisability,unsuccessfully.Ijustneedtokeepapplyinguntilapproved,butit'salengthy,energy‐consumingprocess,andI'MTOOTIRED!Ithinkaboutsuicideeverysingleday.What'sthepointofcontinuing,whenlifeisallstruggleandnoreward?Yes,I'mdepressed.Wouldn'tyoube?”


Missingsince 1993:TammiR.

“WhenIwasinmymid‐20s,myfamilywentonaFloridavacation.Wehadagreatweekofswimming,shoppingandeatingseafood!Onthewayhome,Istartedfeelingveryill.Overthenextfourdays,Igotsickerandmyfeverrose.Doctorsdiscoveredthatmycolonwasswollentwiceitsnormalsize,andIwashospitalizedforseveraldays.TheydeducedthatIhadanunidentifiedintestinalvirus.Ididn’tfeelwellforalongtimeandwheneverIexperiencedstressIfeltexhausted.Afteracoupledaysofbedrest,Iseemedtorecover.Atage30,myillnessbecamechronic,andIwaseither

bedorcouch‐boundforayear,unabletoevenrideinacar.Thankfully,myhealthimprovedafterayearandIwasabletoworkpart‐timeforthreeyears.IreallyenjoyedthispositionandwasabletoworkbecauseIlivedathome,andmymomdidmostofthecookingandcleaning.IattendedaBiblestudyduringthistimeandmetmyhusband.Wemarriedin1996.Myhealthdeclineagainafterthreeyearsofworkingpart‐time,soIquitmyjob.Ihavebeenahomemakerforalmost18years.In2000,aftermysecondrelapse,Ibecamemostlyhousebound.Iwasunabletodriveorcook.Icrawledaroundourhousewearingmyhusband’svolleyballkneepadsfor10monthsbecauseIdidn’thavetheenergytowalk.

In2001,IqualifiedforastudywiththeexperimentaldrugAmpligen.SomeonedrovemetoCharlottetwiceweeklyforthreeyears.Iwentfrom10%functioningabilityandinawheelchairto65%andbeingabletowalkagainforshortdistancesby2003.Myhealthstayedatthislevelforafewyearsandthenbegantodeclineagainin2007.

Iamcurrentlystillonthisdrug.ME/CFSandPosturalOrthostaticTachycardiaSyndrome(POTS)havelargelytakenawaymanythingsIenjoyinlife;anythinginvolvingconcentrationorbrainenergyisimprovingfromAmpligen,butisstillverylimited.Forthelastseveralyears,mytravelhasbeenlimitedtowithinatwo‐hourradiusofourhome.Thankfully,theAmpligeninfusionsareslowlyhelpingmycognitiveandenergysymptoms,however,thehardestpartisgettingpeopletobelievehowillIambecauseIlooksonormal.IhavesufferedwithME/CFSfor23yearsnow.”


Missingsince 1968:MerryS.“Mylasttwoyearsofhighschool—1968‐1970—Iwasunwellallthetimeandinandoutofthehospitalfortests.Atonepoint,Iwasdiagnosedwithesophagitis,laterwithaseverekidneyinfection.Duringthesecondyear,afteramonthofheadacheandfevereveryday,Iconsultedadoctoragain.HewassosurethatIhadaterminaldiseaseoftheconnectivetissuethatheranthetestfivetimes.Everytimethetestwasnegative.Iwassenthomewithadiagnosisofaviralinfection—virusunknown—andaprescriptionforanantidepressant.Somyillness,whichyearslaterIcametoknowasME/CFSbeganwhenIwasateenager.MyexperiencewithME/CFS

began,however,muchearlierthanmyteens,becausemotherwasill.Althoughshewasneverdiagnosed,IhaveabsolutelynodoubtthatshesufferedfromME/CFS.Idon'tremembermymotheraseverwell.Shespentmuchofhertimeasleeponthecouch.

Mmyhealthdidimproveafterhighschool,andIthoughtofmyselfasgenerallyhealthy,butinretrospectIrealizethatIdismissedsymptomsandcutbackonactivities.Mycircleoffriendswassmallerthanithadbeeninhighschool.Ididn'tparticipateinextra‐curricularactivities.Ididn'trespondtotheinvitationtoenrollinHonorsCollege.

Theyearaftergraduationfromcollege,Iworkedinafactory,andalthoughthejobwaslightpacking,itwastoohardforme.Ifeltmoreandmorerundown.FinallyIgotsickwithaterriblesorethroat,achingjoints,etc.

Symptomswaxedandwanedduringthenextcoupleofyears.Somedays,weekseven,Iactuallyfeltok.MyhealthdeclinedagainwhenItriedtogotograduateschoolandafterthatwhenIwasworkingasatechnicalwriter.

Thenthesummerof1988Iwasveryill.LaterIwouldthinkthatImust'vehadhepatitis.Idon'tknow.OnedayasIlayinbed,IthoughtIsawDeathsittingatmycomputer.SincethatsummerIhavenotbeenwelloneday.

In1990IgotadiagnosisofCFS.Myhealthhascontinuedtodeclineastheyearshavegoneby.Sinceamajorcrashinthefallof2009I'vehadtospendmostofmytimeinbed.Iamnow63andclosetotheagemymotherwaswhenshedied.Ihopemylifeisalmostover.”


Missingsince2008:HelenK.

“Eightyearsago,Ibecameillwithmonoattheageof52.Aftersixmonthsofexhaustion,mydoctorstatedIhadchronicfatiguesyndrome.SixmonthsafterthatIwastoldIhavefibro.Imissedsomuchwork.IamanRN.IamoutondisabilityasIwasnotabletoworkenough.Welostourhomebecausewecouldn'tpaythemortgage.OurincomeisaboutathirdofwhatIwasmakingpriortobecomingill!Ican'tcleanmyapartmentthewayitshouldbe,Ican'tcookthewayIusedto.

WehaveverylittleintimacyasIhavenodesire.Ihavesensitivitytolights,soundandsomematerialsandscents.IalsohaveIBS,Icryeasily.Ihavetroublesleeping,whichaffectsmyawaketime.ThispastwinterIwasinbedforovertwomonthsasmybodycrashedagain,andIcamedownwithbronchitis.AndIcouldnotfightitoff.IalsohaveCOPD.

IamnotthegrandmotherIwanttobe.Ioftendon'twanttoseethebabiesortheolderones.Idon'tbakeforthemlikeIusedtodo,simplethings.Ihavenodesire.Anddon'tletmeforgetthesimplethingslikerememberingtoshutthestoveoffwhenItakethepotsoff.OrhowtomakeamealthatI’vemadeathousandtimes.Ordrivingtothegrocerystoreandforgettingwhereorhowtogetthere.Veryfrightening.OrwalkingacrosstheroomandlookinglikeI'vebeendrinkingalcoholallday,Iwobbleandlosemybalancedaily.

Igetoutdailyinthesummertimethepainismuchmoremanageableformeinthesummer.Thewintercanbeintolerableformewiththeconstantchangesinthebarometer.Ialsohavetroubleconcentrating,ifIamonthephonewithsomeone,afterafewminutes,it’sasthoughIdon'thearthem,Iamblank.Thismakesmenotspeakonthephone.AndIisolate.IfeellikeIamnotagoodfriendorwifeofmothertomyfamilyandfriends.Mostunderstand,butthentheyreallydon't.Sotosaymylifehaschangedisanunderstatement.Imissmyself,myjob,mylife...”


Missingsince1981:JanB.“Iam63,a35‐yearsurvivorofME/CFS.Iamhomebound,onlyleavinghomeformedicalappointments.Ibelongtothe25%ofpeoplewithME/CFSintheseverelyaffectedrange.Priortobecomingill,Ihadabusyfulfillinglifeasasinglemother.Iworkedtwojobs:a20‐yearcareerinthementalhealthfieldandapart‐timejob.Ivolunteeredinmycommunity.Ienjoyedwateraerobicsandplayedsoftballandbasketballatthelocalrecreationcenter.Ialsoswam,playedtennisandrodehorses.

In1981,Icouldn'tseemtorecoverfromaparticularlysevereboutofflu.Iwasexhausted,hadtoquitmypart‐timejob,stopvolunteeractivitiesandcurtailmylifetobarenecessities.Ispentmostofmytimeawayfrom

workinbed.Thesymptomshavewaxedandwanedsince,nevercompletelydisappearing.Especiallyhardtodealwitharethe:constantmuscle/jointpain,post‐exertionalmalaiseandcognitivedifficulties(wordfinding),short‐termmemoryloss,extremeexhaustionaftermentaleffort,neuropathy,severepain/numbnessinmyfeetandhands,lossofsensation,photosensitivity,verypoorbalance.Iuseacaneorwalker.Ihaveorthostaticintolerance,onlyabletostanduprightfortwotothreeminutesatatime.

ThetermfatigueisinadequatetodescribetheweightedinabilitytomoveorfunctionthatIfeeleverymomentofmylife.

MylifesincehavingCFShasbeencyclesofrelapseandremission.Witheachcycle,relapsehasextendedandworsened.Itriedcognitivebehaviortherapy(CBT)andgradedexercisetherapy(GET)treatmentthatacceleratedtheprogressionofME/CFSandcausedlossoffunctioningthatIneverregained.

By2006,Iwashouseboundandalmostcompletelybedridden.Iwasn'tabletoconsistentlykeepmedicalappointments.Overtime,Ihaveimprovedenoughtotakecareofmypersonalneedsandattenddoctorappointments.Irequireassistancewithgroceryshoppingandhousecleaning.Ineedoxygen24/7(neversmoked)anduseawalkerorcaneformobility.

Ileftmycareerin1995andwasapprovedforSSDIin1999.Mypoorhealthcausedmetosellmyhomeof33years.Iwasoncetoldbyawomanthatwatchingmeworsenwaslikewatchingmefadeintoaghostbeforehereyes,aTechnicolorpicturefadingtoblurredblackandwhite.”


Missingsince1992:BrieA.“Asayoungster,Iwasamusician,wontwobronzemedalsinJuniorOlympicNationalsforswimmingandwasagoodstudent.Iwashappyandplayful.Asalicensedpsychotherapist,Ihadasuccessfulprivatepractice.Ibecameillwithaflu‐likevirusattheageof24.Idevelopedunrelentingfatigue,jointpain,swollenlymphglandsandsevereheadaches.Iendeduponshort‐termdisabilityforayear.Iwouldsitonthefloorandtrytoholdahairdryer,butmyarmscouldn'tholditformorethanaminute.IwasdiagnosedwithCFS,buteveryonethoughtitwasjustinmyhead.Ihaveaverystrongwillandbegantofeelbetter,thoughneverfeltasgoodasbeforemyillness.

Formanyyears,thesymptomswouldwaxandwane.Iaccommodatedandhidmyillnessfairlywell.Iworkedpart‐timeandwouldsleepontheweekends.Givingupwasneveranoption.Iwasraisedwiththemantra"Whateverthemindcanconceiveandbelieve,itcanachieve."Mypartnerstarteddoingmoreandmore.Prettysoon,shewasdoingallthecooking,cleaninganderrands.IwasusingwhatlittleenergyIhadtokeepworking.Ihadtotakea"sabbatical"foreightmonthsin2003.Wecouldn'taffordformetoquitworkingpart‐time,soIreturnedtomyprivatepractice.IhadstoppedsocializingbecauseIneverhadtheenergy.I'vehadthisdiseasefor24years.Thesymptomshavechangedabit,andI'vegottenreallygoodathidingit.Ievenlearnedhowtodetachfrommybodysoasnottofeelthepain.LastyearwasITforme....Icouldn'tcontinueworking.NothingItriedhelped....Ifinallyreachedmybreakingpoint.Ineverknewthiswasaprogressivedisease,butitis.Inowhaveaneurologicaldisorder.Testingrevealedsevereabnormalities.Attheageof47,Isometimesgetlostgoingtofamiliarplaces,can'tfindtherightword,andhavedifficultywithcalculations/puzzles/orsimplyunderstandingwhatsomeonesays.MyCPETtestingshowsthatonacellularlevel,Idon'thaveenoughenergytodosimpletasks(washingthedishes,vacuuming).IwentondisabilityinOctober2014.ItriedtoreturntoworkinJanuary2015,butonlylastedsixweeks.Inowreceivelong‐termdisability,butthecompanysaysIhavetoproveIamstilldisabledaftertwoyears.Idon'thavegoodmedicalcarebecausetherearenodoctorsinmyareathatareeveninterestedinlearningaboutthisdisease.Patientslikemereallyneedtwothings:1.)Understandingandacceptanceofthisdiseasebythemedicalcommunityandthepublic(anewnametoo);2.)Researchtoinvestintreatment.PleaseHelp!!”


Missing:DonnaW.

“Wehadawonderfullife.Wewereraisingtwoactivegirlswithbusyscheduleseverydayoftheweek.WhenIfirstgotME/CFS,IdidnotknowwhyIdidnotfeelwellanylonger.Asmychildrengrew,eachyearbecomemoredifficulttokeepupwithworking,takingcareofourhome,attendingallthegirls’sportingevents,cooking,volunteerwork,attendingchurchandhavingenergytoenjoylifewithmyfamily.Iwenttothedoctor,butreceivednoanswers.

After10yearsoflivingthisway,Ibecameevenworse.ThedayIwasfinallyforcedtoadmittomy

husbandthatIneededhelpwithourhouseholdwasembarrassingforme.IamblessedthatheunderstoodthatIwaspushingwithallmymighttobeagoodmother,wifeandcontributingmemberofsociety.Wehavenowhadtopayforhomehelpforthepast10years.ThepartthathurtthemostwaswhenIgotsobadthatIcouldnolongerleavethehousetodothingswithmychildren.Theywererobbedofsomanythingsthattheydeservedtoexperiencewiththeirmother.

ME/CFSslowlystoleourlives.Therewerenolongerfamilyoutingsorphysicaloutdoorplaytogether.Mygirlsmissedmypresenceeveryday.By2003,Ihadtostayinbedeveryafternoonandmostoftheevening.ThiswashowIlivedeveryday,andmyfamilymissedmeasmuchasImissedthem.In2009,ME/CFSrenderedmecompletelybedridden.Myamazinghusbandhadtohelpbathme,dressmeandblowdrymyhairsoIcouldcollapseinbedwhenhewasdone.

Wefeellikewehavelosteverything.Normallifedoesnotlivehere.Nomoreeatingoutashusbandandwife.Nomoreentertainingorenjoyingfriends.Theonlywaymyfamilyoranyonecouldseemeistobrieflyvisitmybedside.ThisyearImissedthebirthsofmyfirsttwograndchildren.Icannotevenholdthem.Livingthiswayisheartbreakingforeveryoneinourfamily.Funerals,birthdaysandholidays,foreachonemyfamilyisthere,andIamstuckhereinbedALONE.EatingChristmasdinneraloneshouldnothappen.Pleasehelpallofuswhoarelivinginisolationwithnohopeforafutureoralife.”


Missingsincechildhood:AimeeL.

“ForaslongasIcanremember,Ihavestruggledwithdepletedenergylevels.Iusedtoloseconcentrationinschoolfartooeasilyandcouldsometimesfindthesmallestamountofphysicalexertionexhausting.Ofcourse,Iwasjustlabeledbythosearoundmeatthetimeaslazy;thefactthatIhavealwaysbeenoverweightdidnotdomuchformeeither,ifIamhonest.

Ittookovertwoyears,varioustests,andfailedmedicationformetofinallygetthediagnosisIhadbeensearchingfor:Iwassufferingfrommyalgicencephalomyelitis(ME).

Ithasonlybeen10monthssinceIgotmydiagnosisandinthattimemyhealthhas

plummeted.Ihadtogooffsickfrommyjob,onlytothenhavetoleavealltogetherwhichwasheartbreaking.Thepaininmyjointshasworsened;Icannotwalkwithoutusingmywalkingstick,andIneedaperchingstooltohelpmecarryoutsimpletasks.Thisillnesshasseverelyloweredmyqualityoflifeanditmakesmesoangrythatithasmanagedtodoitsoeasily.

Iusedtowalkeverywhere.Now,IamluckyifIcanmakeittomylocalsupermarket2minutesdowntheroad.

Ilovetoread;Iamamassivebookworm.Now,Icannotmakeitthroughaparagraphanymorewithouthavingtogobacktorereaditbecausetheinformationisjustnotgoingin.

And,Iusedtosing.MyGod,didIloveit!Mywayofescapinganythingandeverythingwastosing.Now,Ibarelyhaveenoughbreathinmetoformacoherentsentence–andthatiswithouthavingtostayonmyfeetfor3‐5minutes.

Ithinkthemostheartbreakingpartformeisthattheillnesshasstolenwhatmymarriageshouldhavebeen.MyhusbandandIweresupposedtogooutintotheworld,experiencethings,andlivetothefullest.Now,weareluckyifIhaveenoughenergyorthepainhassubsidedenoughformetobeabletogetoffthesofatohelpwithtea.

Mybigwake‐upcallwasfallingtryingtogetoutofthebath.Iamnottheablebodied26‐year‐oldIshouldbeandthatisadevastatingthingtocometotermswith.


Missingsince2000:MaryB.

“I was diagnosed with ME/CFS in September 2004. Six years prior to that, I had pneumonia and was in the hospital for a few days. I stayed home for three months with intense and overwhelming fatigue. Eventually, I got better and went back to work. But two years later, I went through the same exact scenario. I got a bad infection and took antibiotics. This time, the fatigue came and did not leave.

I tried working for a year; my Director of Nursing was so amazing and willing to work with me as much as she could. Eventually, I was down to 4 hours/week and even that was too much. My personal physician said it was time to stop. That was one of the most difficult days

for me in my life. I loved nursing and having to give it up was heartbreaking. I kept up my license because I thought I would get better. The changes were life-altering.

My husband took over most chores. It changed his life as well, obviously. All my kids were grown by now and out of the house but very supportive.

This is such an isolating disease. I am alone most of the time. I pace myself throughout the day. Mornings are better for me so that is when I try to get out to grocery shop or run an errand or two. I can load and unload the dishwasher or washer and dryer. I can cook easy meals and make the bed. Besides that my husband does everything else.

If a trip is planned, it needs much advance planning and rest ahead of time. Naps are incorporated into each day. Upon return, it takes weeks to catch up to where I was before the trip. If I become ill, I am really down and out; it takes much longer to recover due to this disease. I try so hard not to get ill. During flu season I try not to go out at all. My husband does the shopping and errand running. I know fairly well what I can and can't do, but there are days that I try to push and do more… and pay the price.

I get 'brain fog'. My words do not come out right. My husband John is my lifesaver, along with my incredible doctor who understands this disease. I count on her and know she will help when I need it. This disease has totally changed our lives and I pray for a cure someday soon!

missing since childhoody9ukb3xpraw1vtswp2e7ia6u-wpengine.netdna-ssl.com/wp...the black dnr bracelet...

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