Trial By Error, by David Tuller
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NICE Rejects My FOI Request
The National Institute for Health and Care Excellence, the U.K. organization that develops clinical guidelines for medical conditions, has rejected my freedom-of-information request for the names of the experts involved in the reassessment of the guidance for the illness it calls CFS/ME. This isn’t surprising, since the agency also recently rejected similar requests from the…
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NICE Declines to Disclose Names of Experts
The Countess of Mar, a well-known advocate for ME/CFS patients in the House of Lords, has received a negative response to her request for the names of the experts involved in the review of the NICE guideline for CFS/ME. The ME Association has not yet received a response related to the same question, nor have…
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The NICE guidelines, and more on the CDC
This month, the U.K. organization currently assessing whether to update the clinical guidelines for the illness it calls CFS/ME is seeking input from “stakeholders” in the process. Unfortunately, that’s not good news—it’s bad news. Why? The National Institute for Health and Care Excellence, or NICE, is an independent body that operates under the sponsorship of…
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The CDC Drops CBT/GET
This is the beginning of a new phase for “Trial by Error.” I initially assumed that my work on PACE and ME/CFS (or ME, or CFS/ME, or CFS) would be a one-off investigation, and then I’d move on to other projects. But after my 15,000-word series was posted on Virology Blog in October of 2015,…
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Guest Post: Questions About Professor Sharpe’s ‘Special Ethics Seminar’
by Steven Lubet On 1 June 2017, Professor Michael Sharpe presented the “Special Ethics Seminar” at Oxford University’s St Cross College. In his posted abstract, he asserted that “some areas of scholarship are politicised (U.K. spelling in original),” including “the role of psychiatric or psychological approaches in the treatment” of ME/CFS patients. Sharpe also likened ME/CFS…
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More on Graded Exercise from Peter White and The Lancet
[June 30, 2017: This post has been corrected and revised.] Professor Peter White and colleagues have published yet another study in The Lancet promoting graded exercise as an appropriate intervention for the illness they refer to as “chronic fatigue syndrome” but that is more appropriately called “myalgic encephalomyelitis.” (Two compromise terms, ME/CFS and CFS/ME, satisfy…
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Is PACE a Case of Research Misconduct?
[June 25, 2017: The last section of this post, about the PLoS One study, has been revised and corrected.] I have tip-toed around the question of research misconduct since I started my PACE investigation. In my long Virology Blog series in October 2015, I decided to document the trial’s extensive list of flaws—or as many…
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University of Bristol Responds, Sort Of
Last week, I e-mailed a letter to Sue Paterson, director of legal services at the University of Bristol, to express my concerns about Professor Esther Crawley’s false claim that I had libeled her in reporting on her research for Virology Blog. On Friday, I received a two-sentence response from Ms. Paterson. She addressed it to…
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My Letter to the University of Bristol
This morning I e-mailed the following letter to Sue Paterson, the University of Bristol’s Director of Legal Services and Deputy University Secretary, to protest Professor Esther Crawley’s accusation that I libeled her in blogging about her work. I cc’d the office of the university’s vice-chancellor, Professor Hugh Brady. Dear Ms. Paterson: I have recently learned…
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Julie Rehmeyer’s Journey “Through the Shadowlands”
In February, 2011, I wrote a bad article about the PACE trial. At that time, I was reporting on the XMRV situation and had never heard about this piece of crap. As happens at news organizations, my editor at The New York Times sent me the Lancet paper and asked me to write it up…
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My “Tear It Up” Talk at Invest in ME
First, since I’m in London at the moment, I need to say that it feels weird and even wrong to be posting about PACE-related issues right after Saturday night’s terrible events. But in our fked-up world, life goes on for everyone else, including ME/CFS patients, and my job is to report this stuff, and so…
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David Tuller’s Fundraiser
If you appreciate the articles written here on ME/CFS, please consider supporting him financially at Crowdrise. David is an investigative reporter with a doctorate in public health from the University of California, Berkeley. Since the fall of 2015, David has waged a determined effort to expose the methodological and ethical problems with the PACE trial for ME/CFS.…