Canary at Cavendish Global
Last Thursday, I had the privilege of speaking at Cavendish Global, a gathering of family foundations, impact investors, and innovators. The attendees in research and biotech are developing some mind-blowing technologies with the potential to dramatically change the lives of people living with conditions as diverse as HIV, spinal cord injury, cancer, autoimmune disease and muscular dystrophy.
I spoke about my personal story and showed our (unpublished) work-in-progress in trailer. After, I asked everyone in the room who had heard of Chronic Fatigue Syndrome to raise their hands. Everyone did. Then I ask them to raise their hands if the image of the disease they had in their minds was the image I had just showed them in the trailer for the film. All hands went down went down but one – an attendee with a family member who has ME.
I've known this instinctively for a long time but this simple exercise – what did you used to know? what do you know now? – gave me a different kind of insight into the true cost of invisibility. So much of why we have been left out of the revolutions in research and technology that have happened the last 30 years is because everyone from our neighbor to our doctor to our politicians to the best the scientists in the world have the wrong image in their minds.
During the presentation, I also spoke about the long history of the disease and how ME came to be called CFS. That our tendency to dismiss or marshall psychology to explain what we cannot readily measure goes back to the beginning of the history of medicine. That we keep doing this to diseases (e.g., epilepsy, multiple sclerosis), no matter how many times advances in technology have proved us wrong.
After, Carol Head from Solve ME/CFS and Kimberly Hicks from the Open Medicine Foundation joined us on stage to discuss their work. Scientists came up to us brimming with ideas about what this could be and what kind of experiments we might run. There was one woman in the room who had not known until that moment that she also had ME. One scientist came up to me and said, "thank you for giving me this challenge."
We've started many interesting and potentially fruitful conversations. I cannot wait for the film to be finished and for what might happen as we beginning to reach more and more audiences.