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David Tuller

Trial By Error: After Last Year’s Tub Talk, Here’s an Interview–Clothed–for #MEAction’s Podcast

13 January 2023 by David Tuller 1 Comment

By David Tuller, DrPH

The last time I was interviewed about my work, I was sitting in a bubble bath with the guy tossing questions at me. That was, of course, my appearance last April on Tub Talks with Damon, a web series in which my friend Damon Jacobs, a gay, sex-positive psychotherapist in New York City, conducts interviews from a unique vantage point. Being interviewed by Damon is a disarming experience, and a disrobing one.

It was fun! But once was enough–if not for me then for the viewing public.

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Filed Under: David Tuller, ME/CFS Tagged With: Jaime Seltzer, MEAction, podcast, tub talk

Trial By Error: Why is the Department of Veterans Affairs Using a 1988 Definition of Chronic Fatigue Syndrome?

9 January 2023 by David Tuller 3 Comments

By David Tuller, DrPH

Even though the US Centers for Disease Control and Prevention in Atlanta is the country’s leading public health agency, other government entities are not always up-to-speed on the latest recommendations. That could explain why the Department of Veterans Affairs appears to be using a variation of the 1988 Holmes definition for chronic fatigue syndrome in assessing current applications for disability benefits.

(A veteran who has had trouble accessing appropriate care contacted me about this issue and alerted me to the various links.)

The DVA’s “Chronic Fatigue Syndrome (CFS) Disability Benefits Questionnaire,” which is supposed to be filled out by the veteran’s provider, is identified as having been updated in April, 2020, and “released” in January 2022. The form includes the following passage:

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Filed Under: David Tuller, ME/CFS Tagged With: federal register, veterans affairs

Trial By Error: Usual Suspects Say NICE Made Eight Errors; Nonsense, Says Committee Member Adam Lowe

29 December 2022 by David Tuller

By David Tuller, DrPH

Update Jan 5, 2023: Martin Rücker, the German investigative journalist who posted the snippets from the draft article, touched base after seeing this post and assured me that the copy he received was not a formally embargoed version provided to reporters before publication. In other words, no embargo was broken, as I had assumed might have been the case. Rücker received the article through a “secure source,” he told me. It is not necessarily clear that the article has already been peer-reviewed or when it might be scheduled for publication.

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Filed Under: David Tuller, ME/CFS Tagged With: Adam Lowe, nice guidelines, usual suspects

Trial By Error: Can Functional Neurological Disorder Be an Indication of Prion Disease?

21 December 2022 by David Tuller

By David Tuller, DrPH

A recent article in the Journal of Neurology presents a twist on the issue of functional neurological disorder (FND). The article, which was published in September, is called “Functional neurological symptoms as initial presentation of Creutzfeldt‐Jakob disease: case series.” Creutzfeldt-Jakob disease is a prion disorder that leads to dementia and death, usually within months.

But first, some background.

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Filed Under: David Tuller, ME/CFS Tagged With: FND, functional neurological disorder, prions

Trial By Error: A Stupid Study of Exercise for Long Covid Patients With Post-Exertional Symptom Exacerbation

20 December 2022 by David Tuller

By David Tuller, DrPH

The Journal of Medical Virology has just published a study called “Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome.” The investigators are from the University of Leeds and the Leeds Community Healthcare NHS Trust.

Post-COVID-19 syndrome (PCS) is the name the investigators are using for what is commonly called long Covid. Post-exertional symptom exacerbation (PESE) is an alternate and arguably more accurate name for what has generally been called post-exertional malaise (PEM).

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Filed Under: David Tuller, ME/CFS Tagged With: Leeds, Long Covid, PESE

Trial By Error: Is the Long Covid Phenomenon an Expression of “Psychosocial Distress”?

14 December 2022 by David Tuller

By David Tuller, DrPH

For the second time in a few weeks, a major US news organization has provided Professor Michael Sharpe, lead PACE investigator and one-time Virology Blog commenter, with a high-profile platform to disseminate his typical blather and nonsense. Both articles—the first in New York Magazine, the second in The New Republic–-have presented the long Covid phenomenon as largely psychosomatic.

I wrote an extended twitter thread and a blog post about the pretty awful New York Magazine piece, which highlighted my 15,000-word investigation of the PACE trial but misrepresented my criticisms. I won’t bother more about that article for now. As for The New Republic‘s iteration by Natalie Shure, an experienced science and health journalist, poet Meghan O’Rourke, author of The Invisible Kingdom, has written an excellent thread about it.

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Filed Under: David Tuller, ME/CFS Tagged With: Long Covid, natalie shure, new republic, new york magazine

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