David Tuller / is on Nostr

Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients. This account is an automatic WordPress-to-Fediverse feed; replies here will not be seen.

Last Notes

2025-05-01 17:14:09

In a Compelling Documentary, Five Doctors Discuss Being Sick
By David Tuller, DrPH
*This is a crowdfunding period at University of California, Berkeley. If you appreciate my work and would like to make a donation (tax-deductible to US taxpayers) to the university in support of my position, here’s the link: https://crowdfund.berkeley.edu/project/46120
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I first connected with Anil van der Zee, a severe ME patient in Amsterdam, when he reached out almost ten years ago to invite me to talk at an event he was organizing in Amsterdam. In his former life, Anil was a ballet dancer. Now, from his bed, he creates compelling and often visually stunning videos about various aspects of life with ME, and related issues.
In this new documentary, Anil talks with five doctors about living with ME and other chronic illnesses–and about how their personal experiences have altered their perspectives on the medical field and the provision of health care. I have posted it below, along with Anil’s introduction. (I wrote a story about doctors with Long Covid for Codastory.com in 2022.)
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Doctors as Patients…Anil van der Zee
In this film, five medical doctors open up about living with #PAIS/#IACC, conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide!
They speak candidly about their experiences with illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm. They reflect on how becoming patients themselves radically changed their views on medicine, science, and what needs to change in healthcare. It’s raw, honest, and incredibly insightful—for medical professionals, researchers, politicians, and patients alike.
This project was a true labor of love. We had zero budget. Three amazing cameramen, a few behind-the-scenes heroes, the MDs themselves, and those from the community who shared material for the film—all volunteered their time and energy. It wasn’t easy: illness and #PEM often got in the way, but we somehow made it.
We’re amateur filmmakers (and I’m definitely the biggest one!), so don’t expect a slick Hollywood production. The real professionals here are the doctors—whose powerful voices, shaped by both medical training and lived experience, definitely need to be heard.
I invite you to watch, leave a like, drop a comment on YouTube to help boost the algorithm, and share it far and wide. This is more than a film—it’s a message the world needs to hear and see!!!
Their stories will hopefully change how you think about medicine—don’t miss it. Watch it, feel it, and let it shift your perspective, especially now that PAIS/IACC conditions have become an even more urgent health issue since the pandemic. Their voices matter more than ever!
The film has English and Dutch subtitles. If you want to translate it to another language let me know.
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#anilVanDerZee #LongCovid #Lyme #PAIS #PEM

2025-02-14 21:00:26

Some Things I’ve Read Recently…in STAT, The Sick Times, Van Der Zee’s Blog
By David Tuller, DrPH
Embedding ME/CFS in NIH’s RECOVER initiative
Ian Lipkin is a well-known professor of epidemiology at Columbia University and director of the Center for Solutions for ME/CFS, funded by the U.S. National Institutes of Health (NIH). In a recent opinion piece for STAT, he and ME/CFS patient advocate Elizabeth Ansell, the founder and executive director of a campaign slugged #NotJustFatigue, call for the NIH’s RECOVER initiative, which investigates Long Covid, to fully embed ME/CFS into its future plans.
The authors note that their appeal for better integration of ME/CFS into the RECOVER mission is aligned with recent recommendations from Congress as well as scientific and medical experts. They also highlights the many challenges that people with ME/CFS can face in trying to navigate an uncaring health care system and deal with dismissive or unsympathetic clinicians.
Here’s a key passage:
“RECOVER has the potential to be a model for innovative, patient-centered research. But for that to happen, NIH must listen to Congress, the scientific community, and the millions of individuals waiting for hope. Including ME/CFS within RECOVER’s scope is not just an opportunity — it’s an imperative. With hundreds of millions in funding and the largest-ever cohort of people with post-viral illnesses, RECOVER could provide the answers that ME/CFS researchers have sought for decades. NIH must seize this moment to lead.”
This is a smart message. But it presumes the future research will be smart as well. The article could have clarified that not all cases lumped into the Long Covid category are the same and that only a subset meet ME/CFS criteria. For research to be useful, it clearly needs to take these facts into account.
You can read the piece here. (Unfortunately, it is behind a paywall, but there seem to be archived versions out there.)
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Dutch CBT/GET ideologues maintain high media profile
My friend Anil van der Zee frequently blogs and makes haunting videos about his experiences as a longtime severe patient. He also takes stunning photographs from his perch on the bed in his Amsterdam flat. He recently wrote a post about his distress at seeing that leading Dutch advocates of cognitive behavior therapy (CBT) and graded exercise therapy (GET) continue to have a major media presence and significant impact on public debate.
Anil’s work is always worth a read (or a view, depending on the medium). Here’s the opening of his recent post (via Google translate):
“I have read the news reports about the opening of long-COVID clinics for children with mixed feelings. On the one hand, I find the stories of children and young people with long COVID incredibly distressing; they are consistent with what we have seen in ME for decades. Many of those with ME are now adults, some even 60+ years old. I am glad that at least there finally seems to be more help for a small proportion of children and young people with long COVID. Hopefully this will be beneficial to all children and young people with post-acute infectious diseases (PAIZ) or infection-associated chronic diseases.
“On the other hand, I read with pain in my heart that a doctor like Sanne Nijhof is given a large platform in the media. It is doctors like Sanne Nijhof and her predecessor and colleague Elise van de Putte from the Wilhelmina Children’s Hospital (WKZ) who have not only researched cognitive behavioral therapy/graded exercise therapy (CBT/GET) in their FITNET-study, but have also actively promoted and praised this treatment.
“As a result, CBT/GET has been applied for years as a standard treatment for children with ME, while we have known for decades that people with ME deteriorate due to post-exertional malaise (PEM) – getting sicker after minor physical, cognitive, sensory, or emotional exertion – from the buildup of activities that these treatments are based on. It is also important to mention that about 50% of Long-Covid patients meet the ME criteria and therefore also have PEM.”
You can read the full blog post here.
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Information disappears from U.S. government websites
The ongoing dismantling of U.S. government agencies and programs is worldwide news. The Sick Times, the online outlet that covers Long Covid, is tracking how the dismantling impacts this specific domain. The news organization reported the other day on the removal of important online information from government websites. The article’s headline: “Now offline: Government resources about Long COVID as a disability.”
Here’s some of the bad news:
“Several government resources about accommodations for people with Long COVID have become unavailable in the last week, following purges of government websites and datasets under the Trump administration. These pages offered crucial information about rights under the Americans with Disabilities Act (ADA) for people with Long COVID and their employers.
“In 2021, the federal government recognized that Long COVID can be considered a disability under the ADA. Pages and articles on AskJAN, a public-facing website by the U.S. Department of Labor’s Job Accommodation Network, explained how people with Long COVID could use this law to request accommodations that would make their jobs, schools, or other aspects of their day-to-day lives possible.
“As of February 11, Long COVID is no longer included in AskJAN’s directory of disabilities. The website’s Long COVID resources — which previously included information about the disease’s legal status, key symptoms, and suggestions for accommodations — are also unavailable. (View an archived copy of AskJAN’s Long COVID landing page here.)“
You can read the full article here.
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Disclosure: My academic position at the University of California, Berkeley, is largely supported by donations to the university via the campus crowdfunding platform from people with ME/CFS, Long Covid, and related disorders.(View the original post at virology.ws)
#anilVanDerZee #lipkin #NotJustFatigue

2025-01-20 19:49:21

Interview with Betsy Ladyzhets and Miles Griffis, Founders/Editors of The Sick Times
By David Tuller, DrPH
In November, 2023, journalists Betsy Ladyzhets and Miles Griffis launched The Sick Times, a publication devoted to, per its tagline, “chronicling the Long Covid crisis.” Both of them had been covering the pandemic, and Griffis had written of his own Long Covid experience. The Sick Times has gained both readers and funders over the last year with its dogged pursuit of this gargantuan public health I interviewed them about their plans right after they began publishing. I caught up with them again recently to review what’s happened in the year+ since then and what they expect to see going forward.(View the original post at virology.ws)
#LongCovid

2025-01-06 19:30:11

Video of October Talk in Ireland on How “Biopsychosocial” Research on ME, Long Covid, and Related Illnesses Harms Patients
By David Tuller, DrPH
In October, I spent 10 days traveling around Ireland and giving a talk called “Bad Science, Bad Medicine: How Flawed Biopsychosocial Studies on ME, Long Covid, etc Harm Patients.” (I wrote about the trip here.) I came as a guest of the Irish ME/CFS Association, which had previously arranged similar tours with two physicians who are ME/CFS experts–Dr William Weir, an infectious disease specialist, and Dr Nigel Speight, a pediatrician.
I started in Dublin and then traveled to Bray, Cork, Limerick, Galway, and Sligo. The Irish ME/CFS Association has now posted a video of the first talk, in Dublin. (I think the talk got a bit smoother as I went along. Oh, well!)(View the original post at virology.ws)
#CODES #FND #LongCovid #PACE

2024-12-18 02:44:22

Cochrane Tells ME/CFS Patients to Go F–k Themselves
By David Tuller, DrPH
Cochrane has just given the finger to the international ME/CFS community. After jerking everyone around and promising for five years to conduct a new review of exercise interventions for the illness, the organization abruptly abandoned that commitment this week. On Monday, Cochrane posted the following message on its website:
“In 2019, Cochrane published an amended version of the review ‘Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding.”
(Under the circumstances, it is incumbent upon Cochrane to withdraw the outdated review that the cancelled one was supposed to replace. To that end, the Science For ME online forum has re-upped its earlier call, via petition, for the organization to do just that. As of this posting, the petition has more than 13,000 signers.)
Also on Monday, members of the team selected to write both the protocol for the new review and the review itself received a terse message alerting them to these developments. The team had submitted a draft protocol to Cochrane almost two years ago but had received no substantive response about its disposition–until now. It seems that Cochrane did not share the draft protocol with members of an Independent Advisory Group, a parallel team appointed to provide guidance and oversight during the process.
The message from Cochrane to the members of the writing team read:
“Dear [names of writing team members],
“This email is to inform you of developments with the submission of your protocol on exercise therapy for ME CFS. There have been some discussions within the different leadership groups of Cochrane about the priority of this review in recent weeks.
“The outcome is that Cochrane has decided not to proceed with an update. Producing a meaningful update of this review is not a priority based on insufficient new research in the field and the available organizational resources to oversee this work.
“You will shortly receive notification that your submission has been withdrawn. This will outline your rights in relation to the content of the protocol.
“Kind regards,
“Office of the Editor in Chief
So that’s it. Five years of effort wasted. Five years of promises un-promised.
It is typical bureaucrat-ese to send a letter from an “office”—as in, the “office of the editor in chief”–rather than from the responsible individual. In this case, I assume we can assume that Karla Soares-Weiser, Cochrane’s actual editor in chief, agrees with the decision issued by her “office.”
The decision represents a complete turnaround from the organization’s position at the time it published the 2019 review from Larun et al, itself an iteration of previous work. The review recommended exercise, albeit with multiple hedges, but it was so fraught with issues that it should never have been published in the first place. However, powerful forces among the GET ideological brigades pressured Cochrane to release it. The drama spilled out into public view–an embarassment for the organization.
When it was finally published, Soares-Weiser made it clear she considered an updated review to be of major importance. As she noted in comments posted on Cochrane’s website at the time:
“Cochrane recognizes the importance of providing the best available evidence on interventions for ME/CFS to enable patients and clinicians across the world to make well-informed decisions about treatment. This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s. Having heard different views expressed about the evidence base for this condition, we acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.
“We have decided, therefore, that a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings…I can confirm that work will begin on this new review at the beginning of 2020 and that we will keep patient groups regularly informed of progress during the subsequent months.”
Cochrane has repeatedly failed to keep patients “informed of progress” over the last five years, despite appeals and requests for updates. Nonetheless, the organization appears to harbor no sense of responsibility for these lapses or feel a need to express any sympathy or compassion towards the patient community it has now tossed aside like yesterday’s trash. Todd Davenport, a professor of physical therapy at the University of the Pacific in Stockton, California, and a member of the writing group, expressed his dismay in a thread on bluesky that included this heartfelt sentiment about Cochrane’s action: “It is some profoundly fucked up shit. And I mean that in the most professional and academic way.”
The sudden decision has generated lots of questions. What changed “in recent weeks” that would lead Cochrane to drop a long-standing commitment to produce a new review? How did the review go from being a high priority to not being a priority at all? Who made the decision, and was it influenced by input from Professor Paul Garner and Professor Sir Simon Wessely, among other high-profile GET proponents? Does Cochrane plan to apologize for having strung everybody along for no reason for years and years, not least the members of the writing team and the Independent Advisory Group?
Beyond that, the first articulated reason for not proceeding—“insufficient new research”—doesn’t hold water. First, as Soare-Weiser’s previous remarks make clear, the dispute over the 2019 review did not revolve around the quantity of new research but around how to interpret reported findings from studies selected based on a review protocol written in 2002. One frequent criticism of the 2019 review, for example, was that it excluded all objective measures from the studies selected. Since those measures almost invariably yielded poor results, including them in the new review would by itself have impacted the conclusions. So the argument about “insufficient new research” is a dodge. A red herring. A transparent excuse to drop the project, not a legitmate reason.
Second, there is definitely some significant new research that is directly relevant. The null results from a much-hyped pediatric trial of graded exercise therapy–spearheaded by Bristol University’s former grant magnet, the methodologically and ethically challenged Esther Crawley–were published earlier this year, These findings undermine claims that GET is an effective intervention—at least for kids. In other words, they contradict the conclusions of the 2019 review. It seems self-serving for Cochrane to dismiss them as “insufficient” grounds for proceeding with a new version. Maybe kids don’t matter to Cochrane?
The argument that Cochrane faces a shortage of resources is not quite as easily dismissed as bullshit. Producing good systematic reviews takes time! What doesn’t make sense here is that Cochane suddenly figured out, after five years, that it doesn’t have the bandwidth for this project. So that point, too, turns out to be another smokescreen. Updating the review is simply not a priority. Cochrane either doesn’t want to do it, or has been pressured not to. Or perhaps both. (View the original post at virology.ws)
#cochrane #GET

2024-12-09 19:51:21

Letter to BMJ Editor Seeking Correction in New Review of Interventions for Long Covid
By David Tuller, DrPH
The BMJ recently published a review of interventions for Long Covid that–surprise!–recommended CBT and a rehabilitation program as treatments. The review is full of holes. I have focused on one in particular. The review relies for its rehabilitation recommendation on an earlier BMJ study–even though that study has itself already been corrected for having misrepresented its findings in key sections. This morning, I sent the following letter to Dr Kamran Abbasi, editor-in-chief of The BMJ:
Dear Dr Abbasi—
A recent paper in The BMJ, Interventions for the management of long covid (post-covid condition): living systematic review, from Zeraatkar et al,drew a crucial conclusion from a trial whose findings were seriously misrepresented. That trial report, also published by The BMJ, has already been corrected. The review needs a similar correction.
Zeraatkar et al recommended a mental and physical health rehabilitation program and cognitive behavior therapy as reasonable interventions for people suffering from the prolonged symptoms that characterize Long Covid. Each recommendation was based on a single clinical trial.
The basis for the first recommendation was Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition (REGAIN study): multicentre randomised controlled trial, from McGregor et al. The paper was published by The BMJ in February of this year and then corrected in May. The initial version failed to note in major sections—such as the conclusion of the abstract—that the sample included only patients who had been hospitalized for acute Covid-19. Given the significant differences between Long Covid patients who have and have not been hospitalized, the trial findings cannot automatically be extrapolated to everyone with prolonged symptoms. The corrected version now makes that clear.
Unfortunately, the review from Zeraatkar et al committed the same error as the pre-corrected version of McGregor et al. The review did not mention in key passages—such as the abstract and conclusion–that its expansive recommendation for mental and physical rehabilitation came from a trial including only patients who had been hospitalized. While the review noted this salient detail deep in the text, it nonetheless suggested that the intervention be offered far more broadly than warranted by the trial itself.
In short, if the trial paper required a correction for not highlighting prominently enough an indisputable limitation of its findings, then the review requires the same.
David Tuller (corresponding author)
Center for Global Public Health
University of California, Berkeley
Berkeley, California, USA
davetuller@berkeley.edu
Nicola Baker
School of Health Sciences
University of Liverpool
Liverpool, England, UK
Svetlana Blitshteyn
Department of Neurology
Jacobs School of Medicine and Biological Sciences
University of Buffalo
Buffalo, New York, USA
Todd Davenport
Department of Physical Therapy
University of the Pacific
Stockton, California, USA
David Davies-Payne
Department of Radiology
Starship Children’s Hospital
Auckland, New Zealand
Andrew Ewing
Department of Chemistry and Molecular Biology
University of Gothenburg
Gothenburg, Sweden
Mark Faghy
Human Sciences Research Centre
University of Derby
Derby, England, UK
Keith Geraghty
Centre for Primary Care and Health Services Research
Faculty of Biology, Medicine and Health
University of Manchester
Manchester, England, UK
Mady Hornig
CORe Community (COVID Recovery through Community)
New York, New York, USA
Brian Hughes
School of Psychology
University of Galway
Galway, Ireland
Leonard Jason
Center for Community Research
DePaul University
Chicago, Illinois, USA
Binita Kane
Respiratory Medicine
Manchester University NHS Foundation Trust
Manchester, England, UK
Douglas Kell
Institute of Systems, Molecular and Integrative Biology
University of Liverpool
Liverpool, England, UK
Asad Khan
North West Lung Centre
Manchester University Hospitals
Manchester, England, UK
Resia Pretorius
Department of Physiological Sciences
Stellenbosch University
Stellenbosch, South Africa
David Putrino
Department of Rehabilitation and Human Performance
Icahn School of Medicine at Mt Sinai
New York, New York, USA
Charles Shepherd
ME Association
Gawcutt, England, UK
John Swartzberg
Division of Infectious Diseases and Vaccinology
School of Public Health
University of California, Berkeley
Berkeley, California, USA
Susan Taylor-Brown
Department of Pediatrics, Developmental & Behavioral Pediatrics
University of Rochester Medical Center
Rochester, New York, USA(View the original post at virology.ws)
#BMJ #LongCovid #REGAIN