Author: David Tuller
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Interview with Karen Hargrave, Co-Founder of #ThereForME
Karen Hargrave is co-founder of an advocacy campaign called #ThereForME, which was launched this past summer to draw public awareness to the UK’s lack of care and treatment and to call “for an NHS [National Health Service] that’s there for people with ME and Long Covid.” The campaign has drawn significant media attention, especially in…
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My Letter to BMJ Seeking Correction to Editorial on REGAIN Trial of Mental-and-Physical-Health Rehab for Long Covid
I have recovered sufficiently from my post-election coma to send off another of my irritating letters to journals–this one to The BMJ. As I mentioned in a post earlier this week, The BMJ has corrected a major paper: “Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19…
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Professor Chris Ponting on “Replicated Blood-Based Biomarkers” for ME in Big Data Pre-Print Study
Along with several colleagues, Professor Chris Ponting, a geneticist at the University of Edinburgh and a leading ME/CFS researcher, recently posted a pre-print called “Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity.” (A pre-print is a paper that has not yet been formally peer-reviewed.) For this analysis, the investigators examined data for more…
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The BMJ Corrects REGAIN Study’s Expansive Claims; Results Only Applicable to Post-Hospitalized Long Covid Patients
In February, The BMJ published a study called Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition (REGAIN study): multicentre randomised controlled trial.” (Post-Covid-19 Condition, or PCC, is one of many current definitions for Long Covid.)The study, led by a team from the University of Warwick,…
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My Tour of Ireland, Through Wind and Rain; Slides of My Talk
Last month, I took a quick speaking tour around Ireland at the invitation of the Irish ME/CFS Association. I first became acquainted with Tom Kindlon, the association’s assistant chairperson, about ten years ago. I was beginning to look into the background of the PACE trial, which purported to have proven the benefits of graded exercise…
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Guardian Columnist George Monbiot on the “Bizarre Cult” at the London-Based Science Media Centre
Last week, Guardian columnist George Monbiot wrote another scathing piece 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 O’Neill, whose death…
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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…