ME/CFS

Trial By Error: Correctives from Putrino & Iwasaki (and Others) to the Long-Covid-Is-Psychosomatic Claims

18 February 2023 by David Tuller

By David Tuller, DrPH

When the pandemic began, everyone involved in the ME, CFS, and ME/CFS domain assumed that there would be a wave of post-acute, prolonged complications, since every virus seems to leave in its wake a small but still significant number of people who report a range of non-specific symptoms. It was also widely predicted that many in the medical world would interpret these physical complaints as psychosomatic, psychogenic, or “functional,” to use the current buzzword in this complicated field.

That has all come to pass.

Trial By Error: Once More Regarding Inflated FND Rates–and a Reprise of a Letter to a Yale Neurologist

11 February 2023 by David Tuller

By David Tuller, DrPH

Last July, I sent a letter to Benjamin Tolchin, a neurologist at Yale, about the statement, in a 2021 paper for which he was the lead author, regarding prevalence rates for functional neurological disorder (FND). Last month, I sent it again. I’ve still had no response.

I am reposting it below because related claims about the prevalence of FND has recently been highlighted by the charity FND Hope UK. The charity organized an FND Parliamentary Awareness Day, which took place on Wednesday of this week. Before the event, the organization sent out an appeal for people to write to their member of Parliament. The sample letter included in the appeal stated categorically that FND is “the second most frequent reason for a neurology outpatient appointment.”

Trial By Error: A Response to Call for “A New Paradigm” for Long Covid in Lancet Respiratory Medicine

2 February 2023 by David Tuller

By David Tuller, DrPH

Update, Feb 3rd:

After less than 24 hours, our letter was rejected by the journal. Here’s the message I received:

Dear Dr Tuller,

Thank you for your recent submission to The Lancet Respiratory Medicine. We have now had time to consider your manuscript and unfortunately, on this occasion, we have decided not to publish it because we have limited space in the journal and cannot give your paper priority over other letters we have in the pipeline.

Although this decision has not been a positive one, I thank you for your interest in the journal and hope it does not deter you from considering us again in the future.

Yours sincerely,

Dr. Emma Grainger
Editor-in-Chief, The Lancet Respiratory Medicine

**********

Trial By Error: My Article About the Life–and Preventable Death–of Maeve Boothby O’Neill

2 February 2023 by David Tuller

By David Tuller, DrPH

Last week, Codastory.com published an article I wrote about Maeve Boothby O’Neill, a 27-year-old in Exeter, England, who died in October, 2021, from complications of ME. The specific cause appears to have been malnutrition. Despite being alerted to the seriousness of Maeve’s condition, the local hospital resisted appeals to insert a feeding tube during her final months.

(My last story for Coda was about doctors with long Covid; before that, I wrote a piece about the Lightning Process as a treatment for ME/CFS.)

The coroner in Exeter is preparing to hold an inquest into Maeve’s death, most likely later this year. Hopefully, the inquest will get to the bottom of the matter, including the role of the actions—and the inactions—of the hospital and its personnel.

Trial By Error: Double Talk on Mind-Body “Dualism” in the Journal of Psychosomatic Research?

23 January 2023 by David Tuller

By David Tuller, DrPH

Proponents of the psychosomatic approach to ME and long Covid–as well as the broader range of so-called “functional” disorders and/or “medically unexplained symptoms”–routinely declare that those who disagree with them are engaging in what they dismissively refer to as mind-body “dualism.” The mind and body are not separate entities, they note, and drawing sharp distinctions between organic and psychological causation is an inherently suspect enterprise.

Ok, then. So why do adherents of this approach keep writing papers that seem fraught with confusion about their own “mind-body dualism” construct? Let’s take one recent example in a prestigious venue: an editorial from a group of French authors in the Journal of Psychosomatic Research called “Why the hypothesis of psychological mechanisms in long COVID is worth considering.” This journal is the official voice of the European Association of Psychosomatic Medicine and is affiliated with the International College of Psychosomatic Medicine. Pretty authoritative stuff.

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

13 January 2023 by David Tuller

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.