BioethxChat
Transcript 20 - April 7, 2014
Topic: Myalgic Encephalomyelitis (#MECFS) & Stigma
Guest Cohosts: @Katiissick, @justice4karinaH
@AnneSpaceCoast, & @knittahknits
Sneak Preview: topics for upcoming chat
T1: R there ethical/societl effects of callng dz MyalgicEncephalomyelitis v ChronicFatigueSyndrome? How do dz names affect perceptions? #bioethx
T2a: ME is often misdiagnosed/mistreated. What additional harms can misdiagnosis/mistreatment expose individuals/HCP/society to? #bioethx
T2b: Sometimes children w ME have been removed from home on abuse/psych grounds. How can we balance protections w proper treatment? #bioethx
T3a: ME is not 'rare,' but can b considered unpopular. What makes (or should make) a dz more likely 2 get funding/research $? #bioethx
T3b: What makes (or should make) a dz more likely to be taught in #meded? How affect patient population if not taught? #bioethx
T4: How can you, patients, HCPs, others help remove stigma from diseases such as ME? Whats 1 thng uv learned 2nite? #bioethx
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For more info on this subject, check out:
1. Myalgic Encephalomyelitis: International Consensus Criteria
2. Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale
3. A Year Later - Karina Hansen Still Confined In Mental Ward
5. CDC AND NIH Officials Discussed "Desirable Outcome" of Seeing A Distinct Illness "Evaporate”
6. International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
9. Karina Hansen deserves a second opinion by an ME expert!
10. The Coalition for Diagnostic Rights
11. The Story of Sophia and M.E.
12. The Hummingbirds' Foundation for ME
13. **Blue Ribbon Foundation Fellowship for Medical Students
14. Bringing Ryan Home: ME/CFS
15. VM: Stigmatization Complicates Infectious Disease Management
17. Faces of Fatigue: Ethical Considerations on the Treatment of Chronic Fatigue Syndrome
Thoughts From The Moderator: