David Tuller

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.

Trial By Error: Top Lightning Process Proponent Privately Lobbied for Approval of Norway’s LP Study

7 December 2022 by David Tuller

By David Tuller, DrPH

*Two corrections had been made in the text below. The NEM committee has 12 members, not nine, as I originally wrote. And when Dr Flottorp wrote her letter, it was not while the NEM committee was considering the proposed Lightning Process trial, as I originally wrote, but before it had progressed that far. The letter was written in expectation that the matter could be forwarded to the NEM committee, which it then was.

Dr Signe Flottorp is a promoter of the Lightning Process for ME/CFS as well as the research director at the Norwegian Institute of Public Health. That’s a scary combination! Dr Flottorp, a general practitioner, is also a fervent member of the Scandinavian arm of the CBT/GET ideological brigades. She and two colleagues recently wrote an ill-informed opinion piece promoting GET and CBT called “Facts and myths about ME” for Aftenposten, a major news organization. Aftenposten also published my rebuttal–with an appealing photo!–in which I declared their unfounded arguments to be “tullprat.” (“Nonsense,” for non-Norwegians.)

Trial By Error: Recent Articles in The Guardian, CNBC and Popular Science

6 December 2022 by David Tuller

By David Tuller, DrPH

As part of an ongoing project on long Covid, The Guardian recently published a powerful excerpt from a book called “What Doesn’t Kill Us Makes Us: Who We Become After Tragedy and Trauma.” The author, Mike Mariani, is an American journalist who a decade ago found himself smacked with a debilitating case of chronic fatigue syndrome, as the illness was generally called then. His experience led him to explore how other people have come through life-altering challenges—a traumatic brain injury, paraplegia, a prison sentence–and managed to refashion their lives, as he was forced to do.

Trial By Error: The Long COVID Survival Guide and the Role of Patients in Research

22 November 2022 by David Tuller

By David Tuller, DrPH

“The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next—Stories and Advice from Twenty Long-Haulers and Experts” is pretty much what it sounds like. The anthology was published earlier this month, and each chapter is written by one or more contributors. The topics covered address long Covid through a variety of lenses–the biases of the health care system, financial impacts, the importance of pacing, the challenge of cognitive impairments, menstruation, disability rights, and so on.

I spoke earlier today with three of those involved in the book. Writer Fiona Lowenstein, the book’s editor, brought public attention to the issue of prolonged recovery early in the pandemic through a prescient opinion piece in The New York Times in April, 2020. Lowenstein is a founder of Body Politic, the wellness collective that generated early survey data about persistent symptoms after acute bouts of Covid-19. Our conversation also included two contributors to The Long COVID Survival Guide. Lisa McCorkell works with the Patient-Led Research Collaborative, which arose out of Body Politic’s efforts, and wrote about how to parse medical research; Padma Priya, an Indian journalist, wrote about the importance of peer-to-peer and community support, especially in countries with fewer medical resources.

Thanks to all three of them! I have posted the conversation on YouTube and below.

Trial By Error: More on that New York Magazine Piece Pushing Psychogenic View of ME/CFS and Long Covid

12 November 2022 by David Tuller

By David Tuller, DrPH

So getting back to that long, ill-informed and poorly reported New York Magazine article on the purportedly psychogenic nature of both long Covid and ME/CFS…I responded in a twitter thread to the article’s misrepresentations of my criticisms about the PACE trial.

The journalist, a science writer named Jeff Wise, didn’t interview me. But he did interview three other critics of the CBT/GET paradigm—Columbia physician-scientist Mady Hornig; Lucinda Bateman, a physician who specializes in ME/CFS and related diseases; and Solve ME/CFS Initiative’s director of advocacy, Emily Taylor. All felt their words and positions were misrepresented and have voiced their objections in a public statement.

Trial By Error: Recent News Articles Highlight Post-Exertional Malaise

11 November 2022 by David Tuller

By David Tuller, DrPH

A few prominent news articles have recently drawn welcome attention to the links and overlaps between ME/CFS and long Covid. One key overlap is the core ME/CFS symptom generally known as “post-exertional malaise” (PEM). This term is so embedded in conversations in the ME and ME/CFS worlds that it is easy to forget others outside that bubble have no idea what it is or what it means or how devastating the experience is for patients.