Year: 2023
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Disastrous Results for Professor Crawley’s Pediatric Online CBT Trial
Pediatrician Esther Crawley, Bristol University’s methodologically and factually challenged grant magnet, has released what seem to be the first outcome results from her much-hyped but fatally flawed FITNET-NHS trial—and they are disastrous. The trial, a pediatric study of online CBT based on similar Dutch research that (falsely) claimed to have proven the effectiveness of the…
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Julie Rehmeyer on the Heartbreaking Loss of Beth Mazur
Beth Mazur was a long-time ME advocate and a co-founder of #MEAction. ME-world was shocked to learn on Friday–two days ago–that she was gone, at the unconscionably young age of 47. At the time, she was visiting New Mexico and Julie Rehmeyer, another patient and advocate. Words often fail at times like this. But Julie…
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Betsy Ladyzhets on New HHS Funding for Long Covid Clinics
Investigative journalist Betsy Ladyzhets is a co-founder of The Sick Times, a new online publication covering long Covid and related disorders. Last week, she wrote about a new grant program for long Covid clinics from the U.S. Agency for Healthcare Research and Quality (AHRQ), part of the Department of Health and Human Services. Here’s the…
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#MEAction’s Jaime Seltzer on Recent NIH Gathering
Last Tuesday and Wednesday (December 12th and 13th), the US National Institutes of Health–and, specifically, the National Institute of Allergy and Infectious Diseases–held a two-day meeting called “Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID.” In 2019, I’d physically attended a similar NIH gathering; this time, I caught many of the…
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Update on Our Letter Concerning the Prevalence of Functional Neurological Disorder
In August, I submitted a letter to NeuroImage: Clinical concerning inflated rates of prevalence of functional neurological disorder, on behalf of myself and nine colleagues. After the letter went through peer review and a round of revisions, I was informed in early November that it had been accepted, as I noted in a blog post.…
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Dutch Survey Respondents Rate GET/CBT as “the Worst” Approach, Per New Report
A survey of more than 1500 patients in the Netherlands with a diagnosis of ME, CFS or ME/CFS rated graded exercise therapy as “the worst” interventions, according to an article on the site of the ME and Disability Support Group, while “explanation and advice about the importance of lying down to prevent worsening of complaints,…
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NHS Lacks Policy on Severe ME, Per Testimony in Pre-Inquest Hearing on Death of Maeve Boothby O’Neill
In January, I wrote a piece for Codastory.com about Maeve Boothby O’Neill, a young woman from Devon, England, who died from ME-related complications in October, 2021, at the age of 27. This week, at a pre-inquest hearing, it was revealed that the medical director of the hospital involved in Maeve’s care declared in a written…
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Interview with Founders of The Sick Times, a New Online Publication
Earlier this month, Betsy Ladyzhets and Miles Griffis, two smart, young American journalists, announced the launch The Sick Times, an online publication focused on long Covid and related post-acute infection syndromes, including ME/CFS. I have met both of them in the last couple of years and have been impressed with their work covering the pandemic,…
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Column in Time Magazine Calls for Halt to Biomedical Long Covid Research
*This is a crowdfunding month at UC Berkeley for my Trial by Error project. If you appreciate my work and would like to help support it, here’s the link for the November campaign. Time magazine recently published an opinion piece that calls for an end to biomedical research for long Covid—based, it seems, on what the authors…
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Cochrane Ends Silence on ME/CFS Exercise Review Developments
*This is a crowdfunding month at UC Berkeley for my Trial by Error project. If you appreciate my work and would like to help support it, here’s the link for this November’s campaign. I recently posted about Cochrane’s unsatisfactory responses to a request from the Science for ME forum that the organization withdraw “Exercise therapy for chronic…
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A Conversation with Lisa McCorkell of the Patient-Led Research Collaborative
*This is a crowdfunding month at UC Berkeley for my Trial by Error project. If you appreciate my work and would like to help support it, here’s the link for this November’s campaign. Lisa McCorkell is a co-founder of the Patient-Led Research Collaborative, a group of people with Long COVID and associated conditions who are…