By David Tuller, DrPH
Last week, I spent three days in Hobart, on the island of Tasmania. Besides strolling around looking for cafes where I could drink decent coffee and write, my main work-related activity was giving a talk at Menzies Institute for Medical Research, part of the University of Tasmania. About 40 people attended, a quarter or so of them medical professionals and the rest patients and carers.
Anyway, after the Hobart talk, a young neuroscientist from the university spoke about efforts to launch a biomedical research project for the illness right there. He had trained at Oxford so was very familiar with the PACE approach and with members of the CBT/GET ideological brigades. He said he’d noticed a definite shift in attitudes towards the illness among colleagues in the last year or two. That was great to hear. It meant that the changes that have seemed apparent among those who know something about the issue might actually be filtering down to medical and health care professionals and researchers not directly involved in this particular struggle.
That talk took place the day after the SBS network aired a moving segment about the challenges Australians with ME/CFS face in seeking benefits. The young journalist who produced the segment, Simon Cunich, captured a few seconds of me in a teary-eyed state while discussing what had motivated me to work on this project. It seems like crying on national TV can boost a crowdfunding campaign! Who knew?
My crowdfunding surged upward again after the weekend, thanks to an unexpected tweet early Monday from a source not known as a fan of my PACE investigation. I want to thank the tweeter for offering his considered input and inspiring so many patients to support my campaign–some for the second or perhaps even third time.
Today I flew across the country from Adelaide to the southwest coast and arrived in Perth, which is said to be the most isolated major city on the planet. I first became fully aware of Perth in 1979, when the U.S. space station Skylab fell to earth. As NASA tracked Skylab’s descent without being able to predict where it would ultimately end its journey, people around the world spent weeks freaking out that chunks of the space station might rein destruction across a densely populated area. As things turned out, Skylab broke apart above the Indian Ocean and pieces crashed to earth after midnight on July 12th (local time) near the town of Esperance, about 700 kilometers southeast of Perth.
I’ve got a packed schedule here but don’t anticipate that kind of excitement during my one-week visit. After this, back east to Brisbane, the Gold Coast, and Lismore–then home in two weeks.
For those who want to support my work for the next year, here’s a link to my crowdfunding page: https://crowdfund.berkeley.edu/project/9730