Trial By Error

Year: 2018

  • May 12th-International ME Awareness Day

    Saturday, May 12th, is International ME Awareness Day. (It’s also International Fibromyalgia Awareness Day, and the same for Gulf War Illness and Multiple Chemical Sensitivity. But here we’re mostly focused on the first.) This day in the calendar was adopted years ago as an opportunity to promote the visibility of neuro-immune diseases. It has more…

  • My Visits with Alem Matthees

    During my week in Perth, I visited Alem Matthees twice. Alem is the patient who successfully fought Queen Mary University of London for access to raw PACE trial data; reanalyses of these data have exposed how the extensive outcome-switching led to the improved results reported by the investigators. Alem’s health has declined dramatically since that…

  • A Q-and-A with Leonard Jason, on Case Definition

    A Brief Update: Berkeley’s crowdfunding period closed on April 30th–Monday night. I ended the campaign with $87,580. After Berkeley’s 7.5% in fees, the funds will cover my salary/benefit from July 1, 2018 to June 30, 2019, and some travel costs. I really, really appreciate the fantastic support. Thanks to everyone! I’ve taken a few days…

  • Goodbye, Australia; and Two Updates

    I’m now at the airport in Sydney waiting for my 12:45 pm flight back home. I arrive in San Francisco at 9:30 am this morning—-gotta love that one-day time change, at least in the eastward direction! I’ve had an amazing six weeks here. I met lots of new friends, connected with others I’d only known…

  • Andrew Lloyd’s Past Endorsement of PACE

    This post is sort of long and complicated, but I think the details are important given Andrew Lloyd’s outsized role in the ME/CFS domain in Australia. I urge patients to take care not to over-exert themselves in reading it! A few weeks ago, I interviewed Andrew Lloyd, an infectious disease specialist at the University of…

  • The Shopping Bag Study; and New York State’s Revamped Website

    And now, from our good friends in the psychology department at the University of Bath, comes the shopping bag study we’ve all been waiting for. Here’s some information recently disseminated by the university: The purpose of this study is to look at how people with CFS/ME respond when asked to do a physically exerting task,…

  • Professor Michael Sharpe’s Gaffe on Australian Radio

    *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…

  • Guest Post: Crowdfunding David Tuller Is Not a Conflict of Interest

    by Steven Lubet 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…

  • Two Interview Podcasts, and “Conflicts of Interest”

    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…

  • My Australian Tour, Continued

    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…

  • A Terrific Piece about ME/CFS on Australian TV

    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…

  • A Post About Andrew Lloyd

    I know folks are eager to hear more about what I’m learning in Australia. I’m finding it challenging to have meetings, prepare for talks, conduct interviews, promote the crowdfunding, keep up with my BMJ Open correspondence, and also write posts about what’s happening here. It will take a bit of time to catch up. But…