covid-19 “long hauler” symptoms survey report

COVID-19“LongHauler”SymptomsSurveyReport

7/25/2020 AStudyConductedbyDr.NatalieJ.LambertandSurvivorCorps

Tocitethisreport,pleasecredit:Lambert,N.J.&SurvivorCorpsCOVID-19“LongHauler”SymptomsSurveyReportIndianaUniversitySchoolofMedicine[2020]

www.survivorcorps.comwww.nataliejlambert.com

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COVID-19“LongHauler”SymptomsSurveyReport

Datacollected:7/25/2020Source:SurvivorCorpsFacebookGroupsurvey

TotalRespondents:1,567+Dr.NatalieJ.Lambert,AssociateProfessor

IndianaUniversitySchoolofMedicine-Email:nalamb@iu.edu

Tocitethisreport,pleasecredit:Lambert,N.J.&SurvivorCorps.COVID-19“LongHauler”SymptomsSurveyReport

IndianaUniversitySchoolofMedicine;2020

Theresultsofthisstudyarethereportedexperiencesofpeoplesufferingfromlong-termCOVID-19symptoms,colloquiallyknownas“LongHaulers.”Thisisnotapeer-reviewedstudy.Datawasanalyzedbyanexperiencedresearcherandweinviteanyresearchersinterestedin

SurvivorCorpsdatatocontactusatHQ@survivorcorps.com.

SurvivorCorpsisagrassrootsmovementconnecting,educatingandmobilizingCOVID-19survivorswiththemedical,scientificandacademicresearchcommunities,tohelpstemthetideofthispandemicandassistinthenationalrecovery.

Context:ManymembersofSurvivorCorpsreportsufferingfromlong-termsymptomsofCOVID-19andhavetakentocallingthemselves“LongHaulers.”Theforumfounder,DianaBerrent,postedasurveyontheSurvivorCorpsFacebookpageaskingmemberswhoidentifiedasLongHaulerstorespondbyselectingalloftheCOVID-19-relatedsymptomstheyhaveexperienced.ThesurveysymptomlistwasbasedoninitialCOVID-19researchconductedbyresearchersaffiliatedwithSurvivorCorps,Dr.NatalieLambertatIndianaUniversitySchoolofMedicineandDr.WendyChungatColombiaUniversityIrvingMedicalCenter.Thesurveywasmade“open”sothatsurveyparticipantscouldaddsymptomstothelist,andthenfutureparticipantscouldalsoselecttheparticipant-addedsymptoms.

SummaryofSurveyFindings:

• LongHaulers’COVID-19symptomsarefarmorenumerousthanwhatiscurrentlylistedontheCDC’swebsite

• WhiletheimpactofCOVID-19onthelungsandvascularsystemhavereceivedsomemediaandmedicalattention,theresultsofthissurveysuggestthatbrain,wholebody,eye,andskinsymptomsarealsofrequent-occurringhealthproblemsforpeoplerecoveringfromCOVID-19

• SurvivorCorpgroupmembersfrequentlyreportreachingouttoprimarycaredoctorsforhelpmanagingsuchlesser-knownandpainfulsymptoms,butfindthatsomephysiciansareunableorunwillingtohelppatientsmanagetheseduetolackofresearch

• Areported26.5%ofsymptomsexperiencedbyLongHaulersaredescribedaspainfulbythegroupmembers

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Dr.Lambertcollectedandanalyzedthesurveyresponses.Theresultsarebrokendowninthefollowingfigures:

• Figure1:SurveypromptpostedintheSurvivorCorpsFacebookgrouppage• Figure2:50mostcommonlyreportedLongHaulersymptoms• Figure3:COVID-19symptomsaccordingtotheCDC(forreference)• Figure4:HowtheSurvivorCorpssurveyresultscomparetotheCOVID-19symptoms

currentlylistedontheCDCwebsite• Figure5:Flowgraphwhichbreaksthereportedsymptomsintoquartilestobetter

visualizetherelativeprevalenceofthesymptoms.SymptomsinthefirstquartilearethemostcommonlyreportedbyLongHaulersandthoseinthefourthquartilearetheleastcommonlyreported.

• Figure6:Dr.Lambertfirstcategorizedeachsymptomaccordingtotheprimarysymptomlocationinthebodyandthencreatedaflowgraphtovisualizewhichorgansaremostimpactedbylong-lastingCOVID-19symptoms

• Figure7:Displaystheofsymptomsassociatedwithpain• Figure8:FulllistofCOVID-19symptoms(n=98)selectedbysurveyparticipants

Figure1.SurveyPromptPostedintheSurvivorCorpsGroupPage

InterpretationofFindings:TheresultsoftheanalysissuggestthatLongHaulers’COVID-19symptomsarefarmorenumerousthanwhatiscurrentlylistedontheCDC’swebsite.WhilethesymptomslistedontheCDC’swebsiteare,exceptfornauseaorvomiting,someofthemostcommonCOVID-19symptomsreportedbyLongHaulers,themismatchbetweenthehealthproblemspeopleareexperiencingandtheinformationthattheycanfindfromofficialhealthsourcesisnoticeableandapotentialcauseforconcern.ItisunderstandablethathealthorganizationsdonotlistsymptomsuntilthereismoreresearchvalidatingwhetherasymptomisCOVID-19relatedorduetoanotherillness,butatthesametimethelackofinformationaboutthebroadrangeoflong-termCOVID-19symptomsmayandlikelydoesdrivepeopletounofficialsourcesofhealthinformationonline.SurvivorCorps,forinstance,isoneplaceonlinewherepeoplewhobelievetheyhaveCOVID-19aregoingforinformationandadvice.

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Additionally,whiletheimpactofCOVID-19onthelungsandvascularsystemhavereceivedsomemediaandmedicalattention,theresultsofthissurveysuggestthatbrain,wholebody,joints,eye,andskinsymptomsarealsofrequent-occurringhealthproblemsforpeoplerecoveringfromCOVID-19.Moreattentionandresearchshouldbefocusedonhowthevirusimpactstheseorgans,especiallyintermsofgivingCOVID-19patientsrelieffromreducedcognitivefunctioning,sleepproblems,andvisionproblems.Asimplecodingoftheparticipant-reportedsymptoms(accordingtowhichcausedpain)revealedthat26.5%ofsymptomsexperiencedbyLongHaulersarepainful.ThereisnotyetawidelyacceptednarrativeinthenewsmediaormedicalfieldsthatpeoplewithCOVID-19whoarerecoveringathome-likemanyLongHaulers-areoftensufferingfrompainfulsymptoms.Thesurveyresultsshowthatbodyaches,nervepain,andjointpainarefrequent,andcommentswithintheSurvivorCorpsgroupanecdotallyshowthatthispaincanbeextremeanddifficulttomanage.Inthegrouppostsandcomments,groupmembersfrequentlyreportreachingouttotheirprimarycaredoctorsforhelpmanagingsuchlesser-knownsymptomsbutfindthattheirphysiciansaresometimesunableorunwillingtohelppatientsmanagelesserknownCOVID-19symptomsduetolackofresearch.Untilresearchintolong-termCOVID-19symptomsisconducted,theseresultsindicatethatanever-increasingnumberofCOVID-19patientscontinuetosufferfromtheiruntreatedsymptoms.Thisstudywasasimplesurvey,butyieldsresultsthatcanbegintoguidefutureCOVID-19researchindirectionsthatareverymeaningfulforthosewhosufferfromthedisease.ThisresearchcanbegreatlyexpandedthroughanalysisofthetensofthousandsofpostsintheSurvivorCorpsFacebookgroup.SurvivorCorpsmembersgenerouslyshareinformationabouttheprogressionoftheirdisease,theirsymptoms,andwhatmedicaltreatmentswerefoundtobeeffective.WehopethatthisstudyandourfutureresearchusingtheSurvivorCorpsdatasetwillgivebacktothecommunitythathassogenerouslydonatedtheirtimetrackingandunderstandingaterribledisease.

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Acknowledgements:WewouldliketothanktheIndianaUniversityPrecisionHealthInitiativeforitssupportandthethousandsofSurvivorCorpsmemberswhoarefightingthevirus,aswellasthosewhohavelosttheirlivestothedisease.SurvivorCorpsFacebookGroup:www.facebook.com/groups/COVID19survivorcorps/

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Figure2.The50MostCommonLongHaulerSymptoms

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Figure3.COVID-19SymptomsAccordingtotheCDCSource:www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms (7/25/2020)

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Figure4.CDCReportedvs.LongHaulerReportedCOVID-19Symptoms

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Figure5.COVID-19SymptomsReportedbyLongHaulersbyQuartile

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Figure6.COVID-19SymptomsReportedbyLongHaulersbySymptomLocation

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Figure7.PainfulSymptomsReportedbyLongHaulers

PainfulSymptomsMuscleorbodyaches FeelingofburningskinHeadache BoneachesinextremitiesPersistentchestpainorpressure NeckmusclepainJointpain KidneypainSorethroat CostochondritisNeuropathyinfeetandhands PainfulscalpRefluxorheartburn BurningsensationsAbdominalpain Mid-backpainatbaseofribsLowerbackpain JawpainCalfcramps HandorwristpainUpperbackpain ColdburningfeelinginlungsSharporsuddenchestpain FootpainMouthsoresorsoretongue UTILowbackpain

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Figure8.FullListofSymptomsReportedbyLongHaulers(n=98)

Symptom #ResponsesFatigue 1,567Muscleorbodyaches 1,046Shortnessofbreathordifficultybreathing 1,020Difficultyconcentratingorfocusing 924Inabilitytoexerciseorbeactive 916Headache 902Difficultysleeping 782Anxiety 746Memoryproblems 714Dizziness 656Persistentchestpainorpressure 609Cough 577Jointpain 566Heartpalpitations 509Diarrhea 506Sorethroat 496Nightsweats 475Partialorcompletelossofsenseofsmell 460Tachycardia 448Feverorchills 441Hairloss 423Blurryvision 418Congestedorrunnynose 414Sadness 413Neuropathyinfeetandhands 401Refluxorheartburn 385Changingsymptoms 381Partialorcompletelossofsenseoftaste 375Phlegminbackofthroat 361Abdominalpain 344Lowerbackpain 319Shortnessofbreathorexhaustionfrombendingover 318Nauseaorvomiting 314Weightgain 300Cloggedears 267Dryeyes 264Calfcramps 258Tremorsorshakiness 257

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Sleepingmorethannormal 254Upperbackpain 253Floatersorflashesoflightinvision 249Rash 247Constantthirst 246Nervesensations 243Tinnitusorhumminginears 233Changedsenseoftaste 221Sharporsuddenchestpain 210Confusion 205Muscletwitching 204Feelingirritable 197Weightloss 195Postnasaldrip 191Drythroat 190Highbloodpressure 181Dryorpeelingskin 179Swollenhandsorfeet 167Heatintolerance 165Mouthsoresorsoretongue 162Neckmusclepain 155Chillsbutnofever 154"Hot"bloodrush 152Phantomsmells 152Boneachesinextremities 139Feelingofburningskin 135Extremepressureatbaseofheadoroccipitalnerve 128Swollenlymphnodes 125Brainpressure 119Kidneypain 115Spikesinbloodpressure 104Costochondritis 98Handorwristpain 96Bulgingveins 95Abnormallylowtemperature 91Mid-backpainatbaseofribs 84Burningsensations 83Jawpain 80Painfulscalp 80Arrhythmia 78Lowbloodoxygen 77

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Coldburningfeelinginlungs 74Crackedordrylips 73Goiterorlumpinthroat 70Footpain 69Eyestyeorinfection 63Covidtoes 59Lowbloodpressure 58Dryscalpordandruff 52Kidneyissuesorproteininurine 47UTI 45Hormoneimbalances 44Thrush 42Gerdwithexcessivesalivation 41Personalitychange(drastic) 41Herpes,EBV,orTrigeminalneuralgia 38Anemia 37Elevatedthyroid 33Bilateralneckthrobbingaroundlymphnodes 32Syncope 31