Category: Uncategorized

  • 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…

  • 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…

  • A Letter to BMJ Open

    Three weeks ago, Professor Racaniello e-mailed a letter of concern to Archives of Disease in Childhood about its recent study of the Lightning Process as a treatment for ME/CFS in kids. The journal’s editor, Dr. Nick Brown, answered within an hour, assuring Professor Racaniello that he took the matter seriously and that the journal would…

  • Letter to British Journal of Sports Medicine from CPET Experts

    Last October, the British Journal of Sports Medicine published a short paper that was essentially a summary of Cochrane’s systematic review of graded exercise for chronic fatigue syndrome (as Cochrane calls the illness). This systematic review is problematic for a number of reasons—not least of which is that it includes the debunked PACE trial and…

  • A Letter to Archives of Disease in Childhood

    Earlier today, Professor Racaniello e-mailed the following letter to Nick Brown, the editor-in-chief of Archives of Disease in Childhood, one of the journals from the BMJ Group. Archives recently published a study of the Lightning Process in kids with ME/CFS. ********** Dear Dr. Brown: In September, Archives of Disease in Childhood published a study called…

  • The School Absence Study, Revisited

    This post is about a serious issue–ethical approval for research studies involving children. It is also about how powerful institutions, like leading medical journals, respond to concerns. But the story is really too long and complicated. I recommend it only for those following things pretty closely or who for whatever reason like this kind of…

  • Bristol’s Complaint to Berkeley

    As it turns out, the University of Bristol did complain about me to Berkeley. I found out recently that there has indeed been “private and confidential communication” at a “senior level,” as Sue Paterson, Bristol’s director of legal services, suggested in her thuggish letter to me last month. I haven’t seen this communication so I’m…

  • My Questions for the Science Media Centre

    On September 20, 2017, a BMJ Publishing Group journal, Archives of Disease in Childhood published the SMILE trial. This trial investigated an intervention called the Lightning Process as a treatment for kids with CFS/ME (as the study called the disease). The lead investigator was Professor Esther Crawley, the University of Bristol pediatrician and a well-known…

  • The SMILE Trial’s Undisclosed Outcome-Swapping

    So let’s talk about Professor Esther Crawley’s SMILE trial, published in September by the journal Archives of Disease in Childhood, one of the BMJ Publishing Group’s titles. The study reported that a commercial intervention called the Lightning Process was an effective treatment for children with CFS/ME when offered along with what was called “specialist medical…

  • My One-Sided Correspondence with Professor Crawley

    Well, last week was certainly exciting! As I wrote on Wednesday, I was planning to post about Professor Esther Crawley’s SMILE trial. However, that plan changed when Sue Paterson, the University of Bristol’s director of legal services, e-mailed me what I guess was supposed to be a scary letter. The letter pointedly cited the “close…