Trial By Error, by David Tuller
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Maeve Boothby O’Neill Inquest Highlights Major Systemic Failures at UK’s National Health Service and in Medical Education
Heartbreaking. Infuriating. Mind-boggling. Those three adjectives are as good as any to describe the testimony heard during the first week of the two-week inquest into the death of Maeve Boothby O’Neill, 27, being held in Exeter, a university town in southwest England. Deborah Archer, the no-nonsense assistant coroner who has kept firm control of the…
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“Effort Preference”? WTF?
When I was a young gay man in the 1980s (I’m 67), a common term for sexual orientation was “sexual preference.” This phrase always struck me as weird. Preference? The urges I felt were not a “preference.” Preference clearly implies a choice—as in, I prefer to live in the city rather than the countryside. I…
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More Debate About Treatment of Severe ME/CFS
Last month, Jonathan Edwards, an emeritus professor of medicine at University College London and an advocate for patients with ME/CFS, published a statement on a pre-print server about managing the nutritional needs of patients with severe disease. (I wrote about it here.) A few days ago, a group of parents and carers released an open…
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New Paper Seeks to Reframe Poor Findings in CODES Trial of CBT for Non-Epileptic Seizures
The CODES trial investigated cognitive behavior therapy (CBT) as a treatment for dissociative seizures (DS), a sub-category of what is now called functional neurological disorder (FND). The intervention was a course of CBT specifically designed to address the variety of factors presumed to be triggering the seizures. (I have previously critiqued CODES here, here, and…
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Professor Edwards’ Take on Nutrition and Severe ME Cases
Jonathan Edwards, a professor emeritus of medicine at University College London, has released a document involving the provision of care for people with severe ME, an issue at the core of some recent high-profile cases in England. The document, which Professor Edwards posted on a pre-print server, is called “Management of Nutritional Failure in People…
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The Conversation Recycles Biopsychosocial Nonsense
A new piece in The Conversation shows just how problematic it is when poorly done biopsychosocial studies claim to have documented that cognitive and/or behavioral therapies are effective—and when these questionable findings are published in high-impact journals. The headline of the article: “Success in treating persistent pain now offers hope for those with Long COVID.”…
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Some Things I Read This Week–Scathing “Effort Preference” Analysis; Kids with Long Covid; National Academies’ Long Covid Definition
An in-depth pushback on “effort preference” When the U.S. National Institutes of Health’s long-delayed “deep phenotyping” study of a handful of ME/CFS patients was released earlier this year, the focus on a weird construct called “effort preference” sucked up all the attention–in part because the paper placed it front and center, in part because no…
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Athlete Oonagh Cousins on the Lightning Process
Oonagh Cousins, a world-class rower who once dreamed of representing Great Britain in the Olympics, got sick early in the pandemic and has been suffering from Long Covid ever since. Her story was first covered by the BBC in November, 2020. A BBC article last year covered how her condition had “crushed her Olympic dream.”…
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Betsy Ladyzhets on Problems with NIH’s RECOVER Initiative
Science journalist Betsy Ladyzhets, co-founder and co-editor of The Sick Times, has been covering the problemls with RECOVER, the $1.15 billion Long Covid initiative from the US National Institutes of Health. Ladyzhets recently wrote a new article about RECOVER, published in The Sick Times as well as STAT, based on documents she received from NIH…
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The Michael Sharpe Crowdfunding Effect
In the past, Professor Michael Sharpe, one of the lead PACE investigators, has intervened in my Berkeley crowdfunding and given my efforts a significant–although presumably unintended–boost. In the spring of 2018, I spent six weeks traveling around Australia, a trip that overlapped with that April’s crowdfunding campaign. During the campaign, Jennie Spotila endorsed it with…
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BBC Takes on Lightning Process and Highlights Perspectives of the So-Called “Anti-Recovery Activists”
For years, I have criticized the research purporting to prove that the Lightning Process, a three-day mind-body workshop that has claimed to be effective in curing ME/CFS and a host of other chronic illnesses. The largest study of the LP, conducted by the methodologically and ethical challenged Esther Crawley, a professor and pediatrician at the…