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

2 February 2023 by David Tuller 1 Comment

By David Tuller, DrPH

Last month, The Lancet Respiratory Medicine published a comment called “A new paradigm is needed to explain long COVID.” Not surprisingly, this “new paradigm” is the same old paradigm that has been applied to ME and CFS patients for decades. That paradigm, of course, has been debunked and discredited–even though many people seem not to have come to terms with that reality yet.

The journal has already rejected a couple of letters responding to the comment. I just submitted another, on behalf of myself and Sarah Tyson, a professor of rehabilitation in the Division of Nursing, Midwifery & Social Work at the University of Manchester. I have also posted it on a pre-print server, and am sharing it below.

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To the editor:

The authors of “A new paradigm is needed to explain Long COVID” suggest that Long Covid is largely a “functional” disorder attributable to pandemic-related stress, anxiety, depression and a host of additional factors unrelated to pathophysiological processes.[1] It goes without saying that psychological states and social and environmental conditions can have a major impact on health status and exacerbate underlying health conditions. Moreover, mental health disorders are often associated with somatic complaints like fatigue and pain. But that’s very different from arguing—without legitimate or valid evidence–that millions of people with devastating and prolonged disabilities are experiencing what the authors call “functional” complaints triggered mainly by mood disorders. Rather than these disorders being the cause of the global wave of life-altering symptoms, they are more plausibly viewed as a frequent consequence of the experience of having a poorly understood and often belittled illness.  

Long Covid is a heterogeneous phenomenon involving multiple symptoms produced through a range of physiological pathways, as has become evident from the emerging research. [2] It would be unwarranted to expect a single unifying explanation to account for long Covid’s many manifestations. However, in supporting their position, the authors cite the lack of “an all-encompassing pathophysiological mechanism.” This is a straw-person argument. No reasonable investigators have proposed the existence of “an all-encompassing, pathophysiological mechanism” that is responsible for generating the entire spectrum of long Covid symptoms.

The authors dismiss efforts to seek pathophysiological explanations for patients’ physical symptoms with the tired charge that this approach represents “dualistic” thinking. As an alternative, they are proposing grand theories regarding “functional” etiologies and apparently expecting others to embrace these unproven speculations—an expectation that suggests a certain level of arrogance. It is simply too soon for investigators to have obtained authoritative answers to a phenomenon as complex and varied as the long-term impacts of coronavirus infection and acute COVID-19. Perhaps if the field of post-viral illness had not been neglected for decades, and patients with ME/CFS and related conditions had not been ignored and mistreated, we would understand a lot more now about the medical challenges confronting long Covid patients.

David Tuller
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley Sarah Tyson

Sarah Tyson
Professor of Rehabilitation
Division of Nursing, Midwifery & Social Work
School of Health Sciences
University of Manchester

[1] Saunders C, Sperling S, Bendstrup E. A new paradigm is needed to explain long COVID. Lancet Respiratory Medicine 2023;11; 2:e12. DOI: 10.1016/S2213-2600(22)00501-X

[2] Davis HE, McCorkell L, Vogel JM, Topol EJ. Long COVID: major findings, mechanisms and recommendations. Nature Reviews Microbiology 2023; Jan 13:1-14. DOI: 10.1038/s41579-022-00846-2

Filed Under: Uncategorized Tagged With: Lancet, Long Covid, new paradigm

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

2 February 2023 by David Tuller 7 Comments

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.

I first learned about Maeve through her dad, Times correspondent Sean O’Neill, who wrote an article last May about her death; he had brought widespread attention to ME in a series of articles the year before. As it turned out, I had previously met her mum, Sarah Boothby, at a conference several years earlier in Bristol. At the time she had mentioned that she was caring for her daughter, but I didn’t made the connection that she was Maeve’s mother until we met again last summer–first on zoom and then at her flat in Exeter.

While working on the piece, I was very aware that both parents would not only be reading what I wrote but would have to live with it as a public representation of their daughter and her experience. It can be especially challenging to write about people who are no longer here and cannot speak for themselves. Often they end up becoming more the objects of scrutiny and comment by others rather than subjects of their own stories.

In this case, my task was made easier because I had access to Maeve’s own writings–from e-mail exchanges, journals, applications for benefits, etc. She was funny and feisty and a really good writer! I wanted to include more but had to make hard choices. Unfortunately, that meant not highlighting Shelf Absorption, a quirky and entertaining site devoted to “everything you ever wanted to know about other people’s bookcases.” Maeve and a friend created it during the early days of the pandemic. I highly recommend checking it out.

Below, I’ve included the top part of the Coda story. For the rest, go to the link here.

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WHEN THE DOCTOR DOESN’T LISTEN:
The medical establishment has a long history of ignoring patients with ‘unexplained’ symptoms. Long Covid might finally bring about a global attitude shift.

In 2017, the London Review of Books published a commentary from an anonymous young woman with a prolonged illness that had seriously impaired her ability to care for herself. The situation was “infuriating,” she wrote in the short but impassioned article.

“Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do,” she wrote.

That young correspondent, Maeve Boothby O’Neill, spoke Russian, listened to jazz and read constantly. She loved musical theater, especially the shows “Wicked,” “Billy Eliot” and “Into the Woods.” She was plotting out a series of 1920s mystery novels set in the villages of Dartmoor, an upland expanse of bogs and rivers and rocky hills in southwest England where Maeve and her mother had once lived.

Maeve died on October 3, 2021. She was 27. On the death certificate, her physician noted “myalgic encephalomyelitis” — an alternate name for the illness known as chronic fatigue syndrome — as the cause. It is rare for a death to be attributed to either ME or CFS. 

An inquest into the circumstances, including the actions (and inactions) of clinicians and administrators at the local arm of the National Health Service, or NHS, is expected to be held later this year. Maeve was diagnosed with the illness in 2012, after several years of poor health. She fought hard to access appropriate medical care and social service support from institutions and bureaucracies that did not seem to understand the disease.

“She did everything she could to survive,” wrote Sarah Boothby, Maeve’s mother, in a statement she prepared for the upcoming inquest. The NHS “did not respond to the severity of Maeve’s presentation, and failed in its duty of care,” wrote Boothby, adding that her death was “premature and wholly preventable.”

Maeve’s father and Boothby’s ex-husband, Sean O’Neill, a journalist at The Times, brought widespread attention to ME in a series of articles, including one last year about Maeve. His “creative, courageous” daughter, wrote O’Neill, “struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society.”

You can read the rest here.

Filed Under: Uncategorized Tagged With: Coda, death, Maeve

Trial By Error: Double Talk on Mind-Body “Dualism”?

23 January 2023 by David Tuller 5 Comments

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.

Surprisingly, the journal’s current and past editors acknowledged, in a revealing 2021 article labeled as a “discussion,” that unblinded studies combined with subjective outcomes have particular issues with bias. And yet the journal’s advisory board includes leading lights of the GET/CBT ideological brigades who don’t recognize that this particular study design can render findings meaningless and uninterpretable. These advisory board members include Denmark’s Per Fink, Germany’s Peter Henningsen, the Netherlands’ Judith Rosmalen, and the UK’s Michael Sharpe and Jon Stone.

Moreover, the journal has distinguished itself in publishing egregious examples of over-claiming by leading members of the GET/CBT ideological brigades. For example, in 2021, the journal published Professor Peter White’s long-term follow-up for his self-help graded exercise therapy program, called GETSET. (Professor White, of course, was one of the three lead investigators of the discredited PACE trial.)

In its “Highlights” section, the article failed to note what should have been its main finding: There were no differences in outcomes between the intervention and comparison groups. Instead, Professor White and his co-authors hyped the intervention as successful based on “within-group” comparisons, which should have been of only secondary interest. (The paper was corrected after I alerted the journal about how the authors had distorted the findings.)  

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Is long Covid a functional disorder?

In the recent Journal of Psychosomatic Research editorial, the authors write:

“Although the potential role of psychological mechanisms in long COVID has long been hypothesized, it has been relatively overlooked so far compared to other potential mechanisms…In certain conditions, genuine symptoms may be experienced without any organic impairment.”

So. The authors are positing two completely separate and distinct kinds of mechanisms that can lead to physical symptoms: “psychological mechanisms” and “organic impairment.” Elsewhere in the piece, the authors assert that “psychological mechanisms are real.”

In other words, this article is arguing that psychological mechanisms are directly causing somatic sensations in the absence of any organic impairment. If comparing the different impacts of these two types of mechanisms is not engaging in “mind-body dualism,” what is? I’m not a philosopher and don’t pretend to have read Descartes. It just seems to me that if you posit that both X and Y can cause Z, you’re positing the independent existence of both X and Y. So why do these folks criticize others for this purported misstep when a form of mind-body dualism seems to be at the heart of their own thinking?

The authors appear to think they are transcending mind-body dualism by invoking the construct of  “functional” disorders, which they define as “the presence of debilitating and persistent symptoms that are not fully explained by damage of the organs they point.” Furthermore, they note, “these disorders are common after an acute medical event, particularly in women, and include psychological risk factors, such as anxiety, depression, and dysfunctional beliefs that can lead to deleterious, yet modifiable health behaviors.”

Absence of evidence of organic impairment based on standard tests and current understanding should not be presented as definitive evidence that symptoms “are not fully explained” by organ damage. Perhaps they are not fully explained by organ damage only at the present time; perhaps they will be explained by organ damage in the future. The apparent assumption is that all currently unexplained “persistent symptoms” are forever unexplainable except by invoking “psychological mechanisms.” This leap of logic is unwarranted.

The passage is also breathtaking in its casual misogyny. Women, it seems, are much more likely than men to harbor “dysfunctional beliefs” about their bodies and their experience of sickness, and much more likely to express psychological distress in the form of bodily symptoms. Perhaps the authors don’t realize that female and male bodies are different? Do they understand that women have higher rates of auto-immune diseases? Hm. I guess since we all know women are hysterics and hyper-emotional, why look further for answers?

Reasonable people would generally agree that stress, anxiety, depression and related states can have an impact on health outcomes, in people with and without other underlying conditions and diseases. Reasonable people could also agree with the authors when, citing observational long Covid research, they state that “at least some persistent symptoms in some patients may be influenced by psychological factors.”

But that’s a modest claim–much more modest than what the authors actually seem to believe. That modest claim aside, the entire thrust of the article is that millions of people around the world are just plain wrong to think pathophysiological processes are causing the disabling symptoms that have devastated their former lives. Instead, the authors’ hypothesis is that, like Pavlov’s dogs, these patients are largely misinterpreting the present because of expectations arising from past experience. As the authors write, physical symptoms “may occur when bottom-up input (i.e., information from body sensors) is overweighted by top-down expectation (i.e., information from prior experiences) in shaping perception.”

It’s all well and good to say that symptoms “may occur” in this manner—but of course that means that they also “may not.” This proposed mechanism is no more than a hypothesis—and one that is essentially impossible to prove or disprove. Yet the authors insist this hypothesis should be taken at face value and assumed to be true for the sake of research and treatment. This expectation would seem to require a certain amount of arrogance.

Near the end, the authors write that, “from a psychosomatic medicine perspective,” misunderstanding of and opposition to their position “originate from the fact that, while psychological mechanisms are ultimately biological (i.e. brain-based), they are often contrasted with biological mechanisms in a dualistic approach.”  

Unfortunately, the authors themselves fall into their own trap. If they insist that psychological mechanisms should not be “contrasted with” biological ones, why are they contrasting “psychological mechanisms” and “organic impairment” in asserting that the former can cause symptoms in the absence of the latter? Isn’t this editorial actually promoting “a dualistic approach” while presenting itself as inveighing against it?

Am I missing something here?

Filed Under: Uncategorized Tagged With: mind-body dualism

TWiV 975: Crossing the Ts with Daniela Weiskopf

15 January 2023 by Vincent Racaniello 1 Comment

Daniela joins TWiV to discuss her career and her research on T cells, their role in infection with SARS-CoV-2, T cell epitopes and why a variant that evades T cell immunity is not likely to emerge.

Hosts: Vincent Racaniello, Alan Dove, and Brianne Barker

Guest: Daniela Weiskopf

Click arrow to play
Download TWiV 975 (58 MB .mp3, 98 min)
Subscribe (free): Apple Podcasts, Google Podcasts, RSS, email

Become a patron of TWiV!

Intro music is by Ronald Jenkees

Show notes at microbe.tv/twiv

Filed Under: This Week in Virology Tagged With: coronavirus, COVID-19, epitope, Omicron, pandemic, SARS-CoV-2, T cell, viral, virology, virus, viruses

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.

[Read more…] about Trial By Error: After Last Year’s Tub Talk, Here’s an Interview–Clothed–for #MEAction’s Podcast

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:

[Read more…] about Trial By Error: Why is the Department of Veterans Affairs Using a 1988 Definition of Chronic Fatigue Syndrome?

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

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