Trial By Error, by David Tuller
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PACE Authors Respond to Monbiot Column with Tired Arguments
Last week, Guardian columnist George Monbiot wrote another scathing column about the failure of the UK health care system to address the plight of people diagnosed with ME/CFS. (Monbiot’s previous column on the issue appeared in March; our interview about it is here.) The new column was pegged to the case of 27-year-old Maeve Boothby…
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Professor Chris Ponting Discusses His Recent Article in The Conversation about the Plight of ME/CFS patients
In the last few years, geneticist Chris Ponting, a professor at the University of Edinburgh, has become a leading researcher in the field of ME/CFS. He is the principal investigator of DecodeME, a large gene-wide association study funded with a major grant from the UK’s Medical Research Council. This week, he published a commentary in…
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Calls for Retraction of Absurd “Effort Preference” Claims from NIH Study
In February, the journal Nature Communications published the US National Institutes of Health’s long-awaited paper, “Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome.” The study included 17 ME/CFS patients, along with 21 healthy controls. The paper immediately triggered howls of protest for a number of reasons, and in particular for the controversial claim at its…
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Extensive News Coverage of Exeter Coroner’s “Report to Prevent Future Deaths”
The case of Maeve Boothby O’Neill, who died in 2021 of malnutrition from severe ME after three hospitalizations failed to halt her decline, has received widespread media attention in the UK. In the most recent development, Deborah Archer, the coroner who conducted the inquest into the matter, this week issued what is called a “Report…
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Coroner in Boothby O’Neill Inquest Issues Report to Prevent Future Deaths
For two weeks in late July and early August, His Majesty’s Assistant Coroner Deborah Archer heard testimony regarding the death of Maeve Boothby O’Neill, a 27-year-old woman who died of malnutrition after three hospitalizations at the Royal Deven and Exeter Hospital (RDE) failed to address her severe case of ME. While Archer’s report on the…
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Interview with Dr Peter Rowe of Johns Hopkins about “Living with Orthostatic Intolerance”
Dr Peter Rowe is a professor of pediatrics at the Johns Hopkins School of Medicine and director of the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center. As an expert on orthostatic intolerance, a common component of ME/CFS, Long Covid and related illnesses, he has recently authored “Living Well with Orthostatic Intolerance: A Guide…
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Norwegian Tabloid Covers Stupid Gulf War Illness/PEM Study; My Letter to Journal Editor on Bogus Claims
Earlier this month, I wrote a post about a new study asserting that “exercise does not cause post-exertional malaise in Veterans with Gulf War Illness.” As I explained, the research, led by experts from the University of Wisconsin and published by the journal Brain, Behavior, and Immunity, made no sense. Although it purported to investigate…
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UK Health Care Professionals Appeal to Health Secretary for Quick Action on Poor ME Care
Tuesday, September 17th, was World Patient Safety Day. (I didn’t know that either.) In the UK, more than 200 physicians, nurses and other health care providers and professionals marked the occasion by issuing an appeal—in the form of a letter to Wes Streeting, Secretary of State for Health and Social Care since–about the dire state…
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Bogus Claims in Study of Exercise and PEM in Gulf War Illness
A recent study investigated a question no one seems to have been asking. That can be a good thing—if it’s a question that’s worth investigating. But that’s not the case here. The study, published in the journal Brain, Behavior, and Immunity and led by researchers at the University of Wisconsin, was called “Exercise does not…
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Little Sign of CBT/GET Ideologues in News Coverage of Inquest and BBC Breakfast Segment on ME and Long Covid
One interesting aspect of the recent inquest into the death of Maeve Boothby O’Neill was the widespread news coverage. Maeve died in October, 2021, in Exeter, UK, of malnutrition arising from her severe ME, as the coroner ruled a few weeks ago. During the two weeks of testimony, from July 22nd through August 2nd, print…
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Post-Inquest Comments from Sarah Boothby, Maeve’s Mum
During the inquest into the death of Maeve Boothby O’Neill, both of her parents refrained from making public statements about the proceedings. The inquest was held in Exeter, in southwest England, UK, from July 22nd till August 2nd. After the coroner, Deborah Archer, issued her findings–that Maeve died of malnutrition as a consequence of her…