Trial By Error

Year: 2018

  • Our Latest Tango with BMJ Open…

    On March 27th, Professor Racaniello and I sent an e-mail to Dr. Trish Groves, editor-in-chief at BMJ Open, declining her request that we send in an e-letter for publication to ensure “maximum transparency.” Two days letter, we received yet another appeal from Dr. Groves. In this e-mail, she promised for the first time that BMJ…

  • My Berkeley-Backed Crowdfunding Campaign

    A couple of times a year, Berkeley offers campus projects an opportunity to crowdfund on the university’s platform. So unlike last year, when I used a third-party site, this time my ME/CFS project is crowdfunding money directly into Berkeley. That saves a lot of hassle, and it also means less money lost in fees. I…

  • A Q-and-A with Scottish MP Carol Monaghan

    On February 20th, Carol Monaghan, a member of Parliament from the Scottish National Party, led an extraordinary debate in the House of Commons about the ethical and methodological failings of the PACE trial. The debate included discussion of the debilitating nature of the illness, the conflicts of interests of the PACE authors, the study’s unfortunate…

  • My Time in Canberra

    I’m in Sydney now, but last week I had a busy few days in Canberra. My hosts were the wonderful duo of Libby Steeper and Eleanor Flowers. They treated me like royalty and shepherded me around town to the various appointments they and others had organized. As a representative of the local ME/CFS organization, Libby…

  • Yet Another Go-Round with BMJ Open

    In response to our last letter to BMJ Open about its ethically challenged school absence study, the journal’s editor, Dr. Trish Groves, once again invited us to submit a letter for publication. We have declined. To recap: In 2011, BMJ Open published a research study that exempted itself from ethical review on the false grounds…

  • Checking in from Melbourne and Canberra…

    So I’ve been in Australia for a week. In Melbourne on Friday, I was happy to spend a couple of hours with Emerge Australia, the local ME/CFS advocacy group. We had video glitches so there is not a continuous tape of the discussion, but here’s a link to at least the first part: https://www.facebook.com/EmergeAustraliaInc/videos/10156242916534111/?fref=mentions&pnref=story On…

  • The Australian Situation, and Professor Crawley’s New Position

    So I arrived in Melbourne on Wednesday afternoon. I’ll be in Australia for several weeks for meetings, interviews and general information-gathering. I’ll post occasionally, but some of the information might be for future blogs and stories. I’ve conducted a Q-and-A about the general situation in the country with Penelope McMillan, the director of ME/CFS Australia…

  • The Dutch Review; My Trip; Bristol’s Silence

    And now some potentially good news from the Netherlands. Two years ago, the Dutch parliament asked the Health Council—an independent scientific advisory body—to review the state of evidence related to the illness generally called chronic fatigue syndrome in the Netherlands. That review was to include the evidence for rehabilitative treatments like cognitive behavior therapy and…

  • Yesterday’s News from the CFS/ME Research Collaborative

    Two pieces of news dominated yesterday’s announcement from the CFS/ME Research Collaborative: First, the group is narrowing its scope of activities to focus on promoting “the discovery of the biological mechanisms that underpin CFS/ME.” Second, Professor Esther Crawley is not only stepping down as deputy chair of the executive board but leaving the executive board…

  • My Exchange With Archives of Disease in Childhood

    On January 30th, Professor Racaniello e-mailed a letter of concern to Archives of Disease in Childhood about a clinical trial of the Lightning Process in children with CFS/ME (as the study called the illness.) The letter, signed by 21 experts and academics, documented the trial’s questionable methodological choices and the investigators’ failure to disclose exactly…

  • News About My Plans

    So I’ve been asked about my plans after June 30th, which is the end of the period covered by last year’s crowdfunding campaign. There’s been significant progress since I launched that effort. Among other developments, the CDC dropped its recommendations for CBT and GET, NICE decided to withdraw its preliminary reaffirmation of its disastrous 2007…

  • Our Exchange of Views with BMJ Open

    Last week, Professor Racaniello e-mailed a letter of concern signed by more than a dozen experts to Dr. Trish Groves, editor-in-chief of BMJ Open. The letter involved Professor Esther Crawley’s school absence study, which the journal published in 2011. As I’d documented in a post last year, the study exempted itself from ethical review based…