Speak out

This questionnaire is intended to give a voice to patients who live with EBV on a daily basis through their distress and hopes, but also to provide statistics on the frequency of certain symptoms or related diseases.

First name*

Last name

Nickname

Email address*

Country*

Duration of your diagnostic delay

Please describe your experience with EBV (first symptoms, difficulties, diagnosis, daily life...). I can do this by:*

WritingVideo

Written testimony:*
Video testimony (accepted formats: mp4, mov, avi, flv, wmw, webm, mkv, svf) :*

How does the Epstein Barr virus impact my daily life?*

What would I have liked to hear from the medical community about this virus?

• About EBV, I would say
• Why is it important to raise awareness about EBV?

3. Some details

The information you provide below is also intended to provide valuable statistics on the real impact of EBV.

In my case, EBV is related to:*

I don't knowprimary infection (mononucleosis)reactivation

Main symptoms:*

Sore throatFeverHeadache, migraineSwollen, painful lymph nodesColdCoughPersistent and/or extreme fatigueBrain fog, disabling cognitive disorders: memory, concentration...Localized or migrating joint painMuscle painAbdominal painLiver disordersFlu-like conditionSkin rashesUnwellness, depressionSicknessFatigueMuscle painMuscular painLocalized or migrating joint painMuscle painAbdominal painLiver disordersFlu-like conditionSkin rashesUnhappiness, depressionDigestive problemsTachycardiaDizziness, vertigoExercise intoleranceBlood pressure drops, low blood pressureTremorsSensations of numbness in one or more limbs, loss of sensitivityRecurrent facial paralysisStomach acheDiarrhoeaNausea and/or vomitingHeartburnConstipationEczema or other skin problemsToothache, bleeding gumsTinnitusNoise intolerance (hyperacusis)Light intoleranceRepeated infections (throat, lungs, cystitis, gastro, etc.) )Sleep disordersPelvic painIntercostal painExcessive sweating and/or inability to sweatBurning sensation on the skin or in the bodyAlcohol intoleranceFood intolerance

Associated medical conditions:*

NoneChronic fatigue syndrome (ME/CFS)Covid-LongCovid 19Infectious mononucleosisLymphomaBreast cancerStomach cancerColorectal cancerDepressionFibromyalgiaLupusRheumatoid arthritisAlzheimer's diseaseParkinsonPeriodontitisCeliac diseaseHashimoto's thyroiditisHépatitisSclerodermaGuillain-Barré syndromeMultiple sclerosisNasopharyngeal carcinomaPsoriasisMéningitisPurpuraMyélitisPTLDSchizophreniaLyme diseaseViral infection, please specifyBacterial infection, please specifyDiabetes type 1Duncan's disease

Treatment received*

Evolution of symptoms*

Through the DetectEBV platform, I would like to:*

Be put in contact with a health professionalsBe involved in the DetectEBV initiative to the best of my abilityReceive information on EBV I want my testimony to be anonymous:* YesNo

The purpose of this questionnaire is to give a voice to caregivers who encounter EBV in their practice and who wish to share their experience but also to express their expectations (patient awareness but also medical and scientific information and training on EBV).

First name*

Last name*

Email address*

City*

Country*

Occupation*

Field*

As a healthcare professional, what role do you think EBV plays in the development of health problems or diseases?* Can you tell us about a particular clinical case where EBV has been involved?*

Can you tell us about a particular clinical case in which EBV has been involved? What are the symptoms or clinical findings that should raise a red flag? What tools do you use to detect EBV?* NoneClinicalSerologyLymphocyte typing

What EBV-associated disease have you ever seen?* Chronic fatigue syndrome (ME/CFS)Covid-LongCovid 19Infectious mononucleosisLymphomaBreast cancerStomach cancerColorectal cancerDepressionFibromyalgiaLupusRheumatoid arthritisAlzheimer's diseaseParkinsonParodontitisCeliac diseaseHashimoto's thyroiditisHépatitisSclerodermaGuillain-Barré syndromeNasopharyngeal carcinomaPsoriasisMéningitisPurpuraMyélitisPTLDSchizophreniaLyme diseaseViral infection, please specifyBacterial infection, please specifyDiabetes type 1Duncan's diseaseNone

What treatment strategy do you use for EBV? * What do you want to tell your colleagues about EBV?* Why do you think it is important to educate patients? What should they be told about EBV?* Some patients discover EBV after months or even years of diagnostic delays. How can we get out of this situation?* What message would you like to send to the scientific community, to Research?*

Through the DetectEBV platform, I would like to:*

Be referenced as a caregiver for EBV patientsBe involved in the DetectEBV initiative to the best of my abilityTo be informed about EBV and DetectEBV related news I want my testimony to be anonymous :* YesNo