Practical Advice for Patients and Families

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Is Long COVID one illness or many? What turns a short infection into years of symptoms? When does “post viral” become a new chronic disease? Is viral persistence driving symptoms in some people? Could EBV reactivation be the hidden trigger? How might immune overreaction turn into autoimmunity? What do autoantibodies actually do to the body? Why do fatigue and exertion intolerance cluster together? Can we define subtypes with biomarkers, not guesswork? How much of long COVID is misdiagnosis versus missed mechanisms? What does pacing really mean in daily life? What would a mechanism first trial design look like? Are there early warning signs for who will stay sick? Is long COVID becoming a stable percentage of society? What would it take to build care systems that learn fast?

Carmen Scheibenbogen is a German immunologist who is the acting director of the Institute for Medical Immunology of the Charité university hospital in Berlin. She specialises in hematology (blood and blood diseases), oncology and immunology. She leads the Outpatient Clinic for Immunodeficiency and the Fatigue Centre at the Charité hospital. She is one of the few doctors specialised in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in Germany, and also researches long COVID.

To explore a different perspective on these issues, we have an excellent episode with Suzanne O'Sullivan, "What is psychosomatic illness?"

Links:

• Resources on ME/CFS and Long COVID
• Guidelines for Long COVID Patients (Ger)

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