David Tuller

Trial By Error: A Q-and-A with Tracie White, author of The Puzzle Solver

3 March 2021 by David Tuller

By David Tuller, DrPH

Tracie White, a science writer at Stanford University, first stumbled across the story of Whitney Dafoe as an assignment from one of her editors. That initial encounter ultimately turned into The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son, an account that Kirkus called “a complex, well-related story of medical detective work.”

The story of Stanford geneticist Ron Davis and his son Whitney’s severe case of ME/CFS was certainly not unknown, given previous coverage–starting with Miriam Tucker’s excellent 2015 feature in The Washington Post. White’s is the first full-length account. During the reporting of the book, she grew close to the family, which included psychologist Janet Dafoe, Whitney’s mom, and his sister Ashley. I asked White a few questions about the process of writing the book.

Trial By Error: National Institutes of Health Director Francis Collins on Plans for Long COVID Research

24 February 2021 by David Tuller

By David Tuller, DrPH

The US government seems to be taking Long COVID seriously. In December, Congress allocated $1.15 billion over four years for research into the issue. This week, Francis Collins, director of the National Institutes of Health, announced the agency’s plans for that funding. (I’ve posted his announcement in full below.) In a post last month he highlighted the plight of the long-haulers and praised the most extensive report yet on their situation. That well-received research report was spearheaded and produced by a patient-led team from the Body Politic COVID-19 Support Group, an online community.

The relationship between what is generally being called ME/CFS and what is generally being called Long COVID is unclear. A number of high-profile news articles–including ones published by The New York Times, The Guardian, and Kaiser Health News–have noted the apparent overlaps in symptoms and in possible or hypothesized causes. These articles have taken at face value the notion that ME/CFS patients are suffering from a serious disease and have not presumed that psychotherapy and exercise are the optimal approaches to treatment.

Both ME/CFS and long COVID are complex phenomena–as is evident from confusion and disagreement over the appropriate nomenclature. ME/CFS is an unsatisfactory hybrid term used to refer to a range of described clinical entities. Long COVID is a convenient and easy-to-understand term but it conveys nothing about the condition’s expansive range of presentations. That variety is better expressed through the scientific name it has been given: Post-Acute Sequelae of SARS-CoV-2 infection (PASC). In other words, there are lots of different sequelae–not just one entity called Long COVID.

Ramped up funding for research into Long COVID could be beneficial for ME/CFS patients. My sense is that many of the latter are hopeful that these investigations could reveal biological mechanisms and pharmaceutical treatments that could be relevent for them as well–especially given apparent similarities in symptoms like post-exertional malaise and cognitive impairment. (I never expected to see the phrase “brain fog” in news headlines all around the world.)

At the same time, there is cause to be wary. This pandemic is now early in its second year, so so-called Long COVID is still a relatively short phenomenon–especially when compared to the decades of illness experienced by many with ME/CFS. Reports of persistent symptoms are known to be common after many viral infections. It is also known that these cases self-resolve most of the time–even if it can take a year or more in some cases.

If it is asserted prematurely or simplistically that Long COVID and ME/CFS are somehow the same, what happens if most of these legions of Long COVID patients get better in the next few months or over the next year? It could easily be presumed that the “multi-disciplinary rehabilitation”–or any number of helpful or non-helpful interventions–led to improvements, even if the recoveries would have happened in any event. In such a scenario, that advice could be presumed to be applicable to ME/CFS patients. Before declarative statements can be made, we need to see a lot more data.

In the meantime, it’s great that NIH has found more than $1 billion to investigate Long COVID. It certainly suggests that more money could have been found ten or twenty years ago to study ME/CFS than the pittance that has historically been allocated. While the amount has increased significantly in recent years, two or three times a pittance is still a relative pittance. (Jennie Spotila provides regular analyses of NIH funding at Occupy M.E., her blog)

Below is the announcement from NIH Director Francis Collins:

**********

NIH launches new initiative to study “Long COVID”

I write to announce a major new NIH initiative to identify the causes and ultimately the means of prevention and treatment of individuals who have been sickened by COVID-19, but don’t recover fully over a period of a few weeks. Large numbers of patients who have been infected with SARS-CoV-2 continue to experience a constellation of symptoms long past the time that they’ve recovered from the initial stages of COVID-19 illness. Often referred to as “Long COVID”, these symptoms, which can include fatigue, shortness of breath, “brain fog”, sleep disorders, fevers, gastrointestinal symptoms, anxiety, and depression, can persist for months and can range from mild to incapacitating. In some cases, new symptoms arise well after the time of infection or evolve over time. In December, NIH held a workshop to summarize what is known about these patients who do not fully recover and identify key gaps in our knowledge about the effects of COVID-19 after the initial stages of infection. In January, I shared the results from the largest global study of these emerging symptoms. While still being defined, these effects can be collectively referred to as Post-Acute Sequelae of SARS-CoV-2 infection (PASC). We do not know yet the magnitude of the problem, but given the number of individuals of all ages who have been or will be infected with SARS-CoV-2, the coronavirus that causes COVID-19, the public health impact could be profound.

In December, Congress provided $1.15 billion in funding over four years for NIH to support research into the prolonged health consequences of SARS-CoV-2 infection. A diverse team of experts from across the agency has worked diligently over the past few weeks to identify the most pressing research questions and the areas of greatest opportunity to address this emerging public health priority. Today we issued the first in a series of Research Opportunity Announcements (ROAs) for the newly formed NIH PASC Initiative. Through this initiative, we aim to learn more about how SARS-CoV-2 may lead to such widespread and lasting symptoms, and to develop ways to treat or prevent these conditions. We believe that the insight we gain from this research will also enhance our knowledge of the basic biology of how humans recover from infection, and improve our understanding of other chronic post-viral syndromes and autoimmune diseases, as well as other diseases with similar symptoms.

Some of the initial underlying questions that this initiative hopes to answer are:

What does the spectrum of recovery from SARS-CoV-2 infection look like across the population?
How many people continue to have symptoms of COVID-19, or even develop new symptoms, after acute SARS-CoV-2 infection?
What is the underlying biological cause of these prolonged symptoms?
What makes some people vulnerable to this but not others?
Does SARS-CoV-2 infection trigger changes in the body that increase the risk of other conditions, such as chronic heart or brain disorders?

These initial research opportunities will support a combination of ongoing and new research studies and the creation of core resources. We anticipate subsequent calls for other kinds of research, in particular opportunities focused on clinical trials to test strategies for treating long-term symptoms and promoting recovery from infection.

Research Studies: A SARS-CoV-2 Recovery Cohort—the central program of this initiative—will leverage ongoing COVID-19 studies, long-term cohort studies established well before the pandemic began, and new studies of people with Long COVID. These studies aim to characterize the long-term effects of infection in a diverse set of people and the trajectory of symptoms over time. The initiative will support a multidisciplinary consortium of investigators who collaborate and coordinate across studies. The initiative also will support two complementary studies: 1) large data studies from resources such as electronic health records and health systems databases that will be critical to understand how many people are affected and what factors contribute to recovery; 2) studies of biological specimens to understand injury to the brain and other organs.

Core Resources: A clinical science core, data resource core, and biorepository core will provide overall consortium coordination, clinical expertise in post-acute COVID symptoms, and facilitate the use of standardized data and biological specimens collected from the consortium studies by consented volunteers.

Our hearts go out to individuals and families who have not only gone through the difficult experience of acute COVID-19, but now find themselves still struggling with lingering and debilitating symptoms. Throughout this pandemic, we have witnessed the resilience of our patient, medical, and scientific communities as they have come together in extraordinary ways. NIH deeply appreciates the contributions of patients who have not fully recovered from SARS-CoV-2 infection and who have offered their experiences and insights to lead us to this point, including those with other post-viral infections. Through the PASC Initiative, we now ask the patient, medical, and scientific communities to come together to help us understand the long-term effects of SARS-CoV-2 infection, and how we may be able to prevent and treat these effects moving forward.

Francis S. Collins, M.D., Ph.D.
Director, National Institutes of Health

Trial By Error: Happy Tenth Anniversary, PACE Trial!

18 February 2021 by David Tuller

By David Tuller, DrPH

It’s been ten years since The Lancet published the first results of the PACE trial. Wow!

Ten years ago, I was 54 and still a graduate student in public health at UC Berkeley. I was also busy writing stories for The New York Times about the mouse retrovirus study that had roiled the field of research into chronic fatigue syndrome—the then-standard name for the illness now referred to as ME/CFS by US government agencies. The mouse retrovirus, XMRV, turned out to be a lab contaminant. The story had struck such a nerve at least in part because of long-standing and lingering speculations that a retrovirus could be involved—a position that retains some strong adherents.

Trial By Error: Hughes-Tuller Comment on Wessely-Chalder CBT Study Rejected by Journal, Posted Here

15 February 2021 by David Tuller

By David Tuller, DrPH

Last fall, Professor Sir Simon Wessely and Professor Trudie Chalder were among several co-authors of a study published in the Journal of the Royal Society of Medicine. The study purported to prove that years of provision of cognitive behavior therapy (CBT) to patients with “chronic fatigue” and “chronic fatigue syndrome” proved that the intervention was a success. I previously pointed out myriad problem in this post last August.

Trial By Error: New Biopsychosocial Paper on Long-Covid and Somatic Symptom Disorder

9 February 2021 by David Tuller

By David Tuller, DrPH

Biopsychosocial Campaigners Target Long-Covid

New papers from the biopsychosocial campaigners often provide opportunities to highlight unwarranted assertions, misleading use of data, and—in particular–associations interpreted as if they were causal relationships and not, well, associations. An article co-authored by Trudie Chalder, a professor of cognitive behavioural therapy at King’s Collge London, and published recently in the Journal of Mental Health, deploys such strategies in its efforts to suggest that large swaths of those experiencing what is being called long-Covid are suffering from “somatic symptom disorder” (SSD).

Trial By Error: An Excerpt from Jamison Hill’s Memoir

3 February 2021 by David Tuller

By David Tuller, DrPH

Three years ago, The New York Times‘ popular Modern Love column published a beautifully written tear-jerker by Jamison Hill–a former bodybuilder with ME. The column, “Love Means Never Having to Say…Anything,” described in tender prose how two people with debilitating chronic illness were able to find and nurture a very special love. It was later selected for oral treatment by Boston’s WBUR radio and read by Pedro Pascal. (I’ve never watched Game of Thrones or The Mandalorian, so I’d never heard of him before, but I’m likely an outlier.)

Anyway, last month Inkshares published Hill’s memoir, When Force Meets Fate: A Mission to Solve an Invisible Illness. Below is a short excerpt. I’m sure many patients will relate to the experience described.

**********

Trial By Error: Professor Paul Garner’s BMJ Blog Post on His Powerful Cognitions

28 January 2021 by David Tuller

By David Tuller, DrPH

Professor Paul Garner, an infectious disease doctor at the Liverpool School of Tropical Medicine, has had a rough time with long-Covid. He has written about his experiences in a series of compelling blog posts on BMJ’s site. At first, he bonded with members of the ME/CFS community and expressed shock at the shoddy treatment these patients have experienced for years. He even invited me to give a presentation to his research group on the discredited PACE trial, which I was pleased to do.

Trial By Error: Professor Lubet’s Inquiry to Medical Center Holding ME/CFS Patient

27 January 2021 by David Tuller

By David Tuller, DrPH

Yesterday, I posted my exchange with a spokeswoman for Hennepin Healthcare about Thane Fredrickson, the ME/CFS patient who is under threat of involuntary psychiatric commitment. Today, Northwestern University law professor Steven Lubet, e-mailed her the following letter.

**********

Dear Ms. Hill: I am a law professor at Northwestern University in Chicago, and I often write articles, for both scholarly and popular publications, about the legal issues relating to ME/CFS. I understand that Hennepin Healthcare has recently referred an ME/CFS patient for involuntary psychiatric commitment, and I have some questions for you. As a law professor, I am fully aware of HIPAA and other privacy requirements. Please be assured that my questions are general, so you may answer without regard to an identified patient:

Trial By Error: My Exchange with Minnesota Medical Center Holding ME/CFS Patient

26 January 2021 by David Tuller

By David Tuller, DrPH

On Monday afternoon, I had an e-mail exchange with Christine Hill, a spokeswoman for the Hennepin Healthcare in Minnesota. Thane Fredrickson, an ME/CFS patient, is currently under threat of involuntary psychiatric commitment. Because of patient privacy concerns, it was clear the medical center would not be able to provide any specific information. But reporters are still obliged to ask questions even when the answer will inevitably be “no comment.” Receiving such an inquiry also alerts an institution, in this case Hennepin Healthcare, that an issue is of public concern and that its actions are being observed.

Thane has lawyers working on his behalf and, as I understand it, is still awaiting a hearing on his case.

The e-mail exchange with the medical center is below.

Trial By Error: Game-Changing Articles in The Guardian and The New York Times

24 January 2021 by David Tuller

By David Tuller, DrPH

The relationship between what is being called long-Covid and ME/CFS (and its variants) is complex. The conditions overlap in ways that are poorly understood, and the mechanisms through which they produce such significant disabilities remain elusive. As the coronavirus pandemic enters its second year, many tens or hundreds of thousands of people around the world are suffering from long-term medical symptoms after an acute bout of Covid-19. It remains to be seen how long their complaints will persist.

« Previous Page