Trial By Error

Category: ME/CFS

  • 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…

  • QMUL and FOI; Nature and Cochrane; the Pineapple Fund

    Queen Mary University of London seems to have devised a fail-safe method of avoiding having to comply with more PACE-related freedom-of-information requests—just declare no one is around who can deal with it. Earlier this month, the U.K. Information Commissioner’s Office issued a decision in an appeal of QMUL’s rejection of a FOI request. The ICO…

  • Professor Crawley’s Bogus BuzzFeed Claims

    Tom Chivers’ terrific article on the Lightning Process and Professor Esther Crawley’s SMILE trial in the Archives of Disease in Childhood has received a lot of attention and comment. I wanted to respond to the short sections in which Professor Crawley seeks to justify her methodological choices. Here are the relevant passages: In the highest-quality…

  • My Six-Month Review

    This month is the start of the second half of my one-year crowdfunding commitment to keep reporting on ME/CFS, so I figured I should review what I’ve done so far, what I still hope to do, and what changes have taken place during the last six months. So, here goes. From July 1st through December…

  • COPE to BMJ Open: More Details, Please!

    Yesterday I reviewed an account of a publishing dilemma that had been submitted to the forum of the Committee on Publication Ethics. The COPE forum offers advice on thorny situations submitted anonymously by members. In this case, the submission appeared to be from BMJ Open and it appeared to be discussing Professor Esther Crawley’s school…

  • A Sneak Preview of Next Week’s Post

    I wanted to post something this week, but not a whole long thing. So I thought I’d just post the top of what I’ll post in full next week. This week ends the first half–six months!–of my crowdfunded project. Sometime soon I’ll post something or other looking backward and forward a bit. But not today.…

  • No Ethical Review of Crawley School Absence Study

    This is a complicated post. Here are the key points. The rest is details: *Professor Esther Crawley and co-authors claimed a 2011 study in BMJ Open was exempt from ethical review because it involved the routine collection of data for “service evaluation.” Yet the 2011 study was not an evaluation of routine clinical service provision–it…

  • My E-Mail Exchange With NICE Chief Executive

    On Friday, I had an e-mail exchange with Sir Andrew Dillon, chief executive of the NICE Guidance Executive. The other seven Guidance Executive members are various directors within the NICE hierarchy, including the communications director. This group will make the final decision about whether to accept the provisional decision of a NICE surveillance review team…