*A clarification has been added to this post–see below
It’s Thursday morning in Australia, and I’ve just arrived in Brisbane after a red-eye from Perth, with a week left to go on my tour Down Under. Of course I’m backed up on things I need to write about, and hope to have some down time soon to pull stuff together. (I only post on here from Monday to Wednesday, because Professor Racaniello posts from Thursday to Sunday. I’m doing this post now from the Brisbane airport so I can get it up before Wednesday ends in New York.)
Steven Lubet is the Williams Memorial Professor at Northwestern University Pritzker School of Law, where he specializes in professional responsibility and ethics.
When last we encountered Prof. Michael Sharpe, he was giving a secret speech about ME/CFS at Oxford University’s St Cross College. Titled a “Special Ethics Seminar,” Sharpe’s presentation was closed to the public, in contrast to similar lectures in the same series, and neither Sharpe nor the college administrators responded to my request for information about his subject matter. Based on the posted abstract, however, we do know that Sharpe compared his critics – meaning those who reject the PACE trial’s biopsychosocial theory of ME/CFS – to climate change deniers, while complaining about what he called “the coordinated harassment of researchers.”
For those not yet sick of my voice, here are two more chances to hear me reiterate variations of my message:
On Monday morning, I was interviewed in Perth for the radio show Mornings with Gareth Parker, on the 6PR882 Talk Radio network. (Never mind that the description in the link below identifies me as being from Berkley University.)
And last Wednesday, before flying from Adelaide to Perth, I was interviewed for a podcast on Radio Adelaide, along with long-time ME/CFS patients Penelope McMillan and Tania Emms.* [Corrected 4/18/2018 from “Emma”] The podcast was posted on Sunday.
Please join us and show your support for science in Washington Square Park from 9 AM on Saturday, 14 April. There will be a series of short talks starting at 10 AM, and at noon we will all march downtown to Zuccotti Park. I’ll be wearing a This Week in Virology t-shirt.
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.
The TWiV team reveals that recent mumps virus outbreaks in the US are due to waning vaccine efficacy, and an intranasally delivered small interfering RNA that controls West Nile infection in the brain.
The National Institutes of Health is the major funding agency for biomedical research in the United States. Nevertheless, there are shocking disparities in grant awards for investigators according to race, gender, age, institution, and state. Such unbalanced allocations must be corrected as they do not encourage the varied perspectives, creative ideas and experimental approaches that are needed for a strong research enterprise.
SBS, a national TV network in Australian, featured a 12-minute segment last night on a show called The Feed. It was already in the works when I got here, so my visit was timely. I didn’t expect to cry during my interview, but, well, I did. As a journalist, I immediately knew that moment would be featured in the segment. It’s a compelling and heartbreaking look at the difficulties people here confront in obtaining the benefits and support they need to manage their lives as best as possible, given their severe disabilities.
If you want to support my efforts to expose the neglect and abuse people with ME (or CFS, or ME/CFS, or CFS/ME) have experienced in countries around the world, please consider supporting my current crowdfunding campaign on Berkeley’s platform. The money is going to support my reporting project for another year–from July, 2018, through June, 2019.
As of now, I have reached 30% of my goal, thanks to 268 generous donors. During last year’s crowdfunding, I received 1008 donations; it would be fantastic to surpass that total. No gift is too small. Please help me maintain the momentum!