Thursday, November 14, 2013

@TEDFellow Takeover

@jenbrea is taking over the TED Fellows Twitter account next week (https://twitter.com/TEDFellow). It's followed by about 12,000 people passionate about TED. I'd love to use it as a chance to highlight links to media (video, photo, text) not just about ME, but all the issues surrounding and the concepts and trends that cut across communities.

Please post your suggestions here!

Trends:
- The rise of chronic illness (esp. illnesses of immune dysregulation)
- The Quantified Self
- Personalized medicine
- Participatory medicine
- Pathophysiology that might cut across diseases (e.g., altered microbiome, mitochondrial dysfunction, autonomic dysfunction)

Some themes to consider:
- History of medicine
- Gender & medicine
- Politics of health & healthcare
- Insurance, disability, earning a living
- Psychiatry v. neurology
- Medicine v. science- Forced psychiatric institutionalization (historic and contemporary)
- Famous or historical figures with ME
- Anything nerdy (but written up in popular science) about the possible causes of ME: viruses and methods to detect them, environment illness, genetics, Epidemic of Absence
- Personal stories, blogs
- Art or music
- Favorite quotes from essays or books you have read – someone recently mentioned Susan Sontag and Virginia Woolf – that you think might apply to the story of ME

The list goes on...
Hints:

Think about what might appeal to a general audience and not require a lot of background knowledge to interpret. So for example, I will not be tweeting the ICC and I will probably not be tweeting any medical studies.

Try to abstract from the specifics of our disease and think about the broader themes or analogies that might help the uninitiated better understand the situation this patient community finds itself it in.

1 comment:

  1. Might be a bit tangential, but for my money the biggest problem facing us is the lack of replication of a thousand different promising ME/CFS studies. Really good piece in The Economist (http://www.economist.com/news/briefing/21588057-scientists-think-science-self-correcting-alarming-degree-it-not-trouble), and I have blogged about it's relevance to ME here (http://phoenixrising.me/archives/12124) though not up to TED standards :(

    The XMRV episode, though painful, at least gave us a definitive answer within a couple of years - not happened in any other area of ME/CFS research.

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