Author: David Tuller
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That Whine De Coeur about NICE’s Rejection of GET/CBT Regimen, and ME Action UK’s Disappearing Rebuttal
On July 10th, the Journal of Neurology, Neurosurgery, and Psychiatry (JNNP) published what can only be called a whine de coeur from a bunch of academics and investigators on the wrong side of a dispute with Britain’s National Institute for Health and Care Excellence (NICE). Their article was called “Anomalies in the review process and…
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Psych Medicine’s Rejects Request for Correction of Prevalence Rates Cited in FND Paper–Updated
UPDATE: Not long after I sent the letter repeating our request for a correction, I received a response directly from Professor Murray, the editor-in-chief of Psychological Medicine who had commented on the length of our initial request for a correction. Here it is: From: Robin Murray Date: Thu, Jul 20, 2023 at 9:02 AM Subject: Re: request…
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Dutch Team Offers “Dog-Ate-My-Data” Excuses for Not Reporting Null Objective Findings
Two months ago, Clinical Infectious Diseases (CID), a high-impact journal, published a study called “Efficacy of Cognitive-Behavioral Therapy Targeting Severe Fatigue Following Coronavirus Disease 2019: Results of a Randomized Controlled Trial.” The study, nicknamed ReCOVer amd conducted in the Netherlands, purported to provide the “first evidence for the positive effect of CBT in patients with…
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Update on Efforts to Correct False Statements about FND Prevalence
I have continued writing my letter-writing effort to alert journals about papers on functional neurological disorder (FND) that have included false statements regarding the prevalence of the condition reported by a seminal study in the field the reported prevalence of the condition. (I was going to refer to this as a “letter-writing campaign” until I…
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My Twitter Thread about Slate’s Piece on Long Covid and Mental Illness
Slate recently ran a piece by a young journalist and Stanford neuroscience graduate student, Grace Huckins, about purported links between long Covid and mental illness. I found it problematic. For one thing, in the same sentence it linked to both a story of mine in Codastory.com and one from The Atlantic‘s Ed Yong, and asserted…
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A Letter to Psychological Medicine about Inflated FND Rate Claims
The journal NeuroImage: Clinical, an Elsevier title, recently agreed to correct the false statement that a 2010 study found functional neurological disorder to be the second-most-common diagnosis at outpatient neurology clinics. To the journal’s credit, it responded positively within days of receiving a letter about the matter from a group of us, although the correction…
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A Letter Requesting Corrections of Inflated Prevalence Rates in Nine More FND Papers
Several colleagues and I recently wrote to the journal NeuroImage: Clinical to request a correction in a 2021 article about functional neurological disorder (FND). The article included the false claim that a seminal 2010 study found that FND was the second-most-common diagnosis at outpatient neurology clinics. In fact, FND—called conversion disorder at the time—was the…
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Families with Long Covid Kids Fight Against Social Services
For decades in the UK, parents of children with what was formerly called chronic fatigue syndrome have run the risk of being accused of making or keeping their kids sick and/or not pursuing proper treatment strategies. These cases have been based on the discredited belief that graded exercise therapy (GET) and cognitive behavior therapy (CBT)…
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FND Experts Agree To Correct Inflated Prevalence Claim
For years, experts in functional neurological disorder (FND) have cited a seminal study in their field to claim that the diagnosis was the second-most-common presentation at outpatient neurology clinics, with a prevalence of 16%. This claim was, and is, categorically untrue. The Scottish Neurological Symptoms Study (SNSS), which yielded multiple papers about a dozen years…
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Action For ME Report on NICE Guidelines; Brian Hughes on Myths About the Guidelines; Michael Sharpe’s San Francisco Speech
I often feel so far behind in keeping up with developments in this field. Here are a few recent items I wanted to highlight. Action For ME’s report on NHS adoption of the new NICE guidelines In October, 2021, after a protracted and highly contentious process, the UK’s National Institute for Health and Care Excellence…
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Claim that CBT Is Safe Is “Misleading,” Says Dutch Ad Group
In a recent decision, the Advertising Code Foundation in the Netherlands has criticized as “misleading” a statement on the website of the Knowledge Center for Chronic Fatigue (NKCV) touting its treatment approach as “not harmful.” The decision is something of a slap at the NKCV and its co-leader, Professor Hans Knoop, a psychologist and a…
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Author Michael Alenyikov on ME and the Writing Life
Michael Alenyikov was the first person I knew with ME, or what was then being called CFIDS—chronic fatigue immune disorder syndrome. We met in the mid-1980s in NY—we were younger then!—and we both moved to San Francisco in the 1990s. Michael trained as a clinical psychologist but switched his professional focus to writing, focusing on…