Trial By Error, by David Tuller
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A Letter to NICE About the IAPT Program
This morning I sent the following e-mail to key NICE executives involved in the effort to overhaul the clinical guidance for ME/CFS. I cc’d several stakeholders in the process as well. ********** Dear Sir Andrew and Professor Baker (and others)— In an e-mail to Sir Andrew last year, I posed some questions concerning the involvement…
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A Curriculum for Treating CFS with CBT
Ten years ago, the National Health Service began rolling out across England a program called Improving Access to Psychological Therapies, or IAPT. This program arose out of the notion that many people were suffering from untreated depression, anxiety and other psychiatric disorders. In parallel with that, research suggested that treating these ailments would not only…
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More Letters About BMJ’s Flawed Pediatric Studies
This morning I sent three more e-mails alerting interested parties to my concerns about two BMJ studies of children with ME/CFS. When it comes to research, kids are already a vulnerable population, and those with a stigmatizing illness even more so. That’s why it is both surprising and troubling that BMJ appears to have little…
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My Letter to the Science Media Centre about BMJ Study
I have sent the following e-mail to Edward Sykes, the head of mental health and neuroscience at the Science Media Centre. The e-mail concerns the Lightning Process study published last year in Archives of Disease in Childhood. The SMC promoted the findings, which received widespread media coverage. I have cc’d Fiona Godlee, the editor in…
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A Letter to Health Officials About BMJ’s Lax Editorial Standards
I am not sure what is going on at BMJ and why editors there seem incapable of acknowledging their flawed decision-making when it comes to two papers that should never have been accepted for publication. One violated BMJ’s policy that all trials must be properly prospectively registered, with no participants recruited beforehand. The other violated…
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My Letter to MP Monaghan About BMJ Studies
I have been trying to convince editors at two BMJ journals to take responsibility for poor decisions. Despite serious nudging and prodding, I have been unsuccessful. The two papers I have criticized as being fraught with methodological and/or ethical missteps are these: “Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care…
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BMJ Still “Looking Into” Lightning Process Paper
Two weeks ago I sent an e-mail to Sir Andrew Dillon and Professor Mark Baker alerting them of problems with the Lightning Process study published last year in Archives of Disease in Childhood. The two men are members of the NICE Guidance Executive and have a hand in the current process of developing what might…
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My 2011 NY Times Exchange With the PACE PIs
When the PACE trial was published in early 2011, my New York Times editor sent it to me, along with the press release. As a non-staff contributor to the Times, I had started covering the debate over the mouse retrovirus hypothesis and science, but I’d heard nothing about anything called PACE or graded exercise therapy.…
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NICE’s Consideration of the Lightning Process
Earlier this month, in advance of a stakeholder meeting, the U.K.’s National Institute for Health and Care Excellence released a draft scoping report. The document outlined the issues slated to be addressed by the committee selected to develop the new guidance for the illness NICE now calls ME/CFS. (The 2007 guidance referred to it as…
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More on the CDC; Reader’s Digest; and BBC’s Newsbeat
It’s been almost a year since the CDC removed its recommendations for GET and CBT as treatments for ME/CFS (or CFS, or ME, or CFS/ME, or even SEID or whatever else one calls this illness or cluster of illnesses). When questioned about the decision, the agency explained that people had misunderstood what was meant by…
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Australia’s Online GET/CBT Education Program
Last year, BMJ Open published a paper called “Randomised controlled trial of online continuing education for health professionals to improve the management of chronic fatigue syndrome: a study protocol.” The seven authors, all affiliated with the University of New South Wales in Sydney, included Professor Andrew Lloyd, the infectious disease expert and the country’s leading…
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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…