Category: Syndicated
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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…
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Letter on Inflated FND Prevalence Rates Accepted for Publication
As I have regularly noted, patients with diagnoses of functional neurological disorder (FND) experience tremendous suffering. A patient who goes by the moniker @FnDPortal has written a compelling and sometimes harrowing essay, Cadenza for Fractured Consciousness: A Personal History of the World’s Most Misunderstood Illness, that is well worth a read in order to understand some…
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What’s Going On with Cochrane’s Exercise Review Mess?
On September 4th, the Science for ME (S4ME) forum sent an open letter to Cochrane’s editor-in-chief, Karla Soares-Weiser, requesting the “immediate withdrawal or retraction” of “Exercise therapy for chronic fatigue syndrome,” a 2019 review. The review over-stated the evidence in favor of exercise therapies and has been widely and appropriately criticized for its seriously flawed…
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A Crap Study on “Psychosomatic Therapy” for “Persistent Somatic Symptoms”
*This post has been corrected. I initially wrote that the protocol did not appear to call for sub-group analyses, but it appears it did. I also included a passage about that is from documentation in the supplemental material. I had identified it as coming from the protocol. I apologize for the errors. Dutch investigators appear…