By David Tuller, DrPH
Last month, I took a quick speaking tour around Ireland at the invitation of the Irish ME/CFS Association. I first became acquainted with Tom Kindlon, the association’s assistant chairperson, about ten years ago. I was beginning to look into the background of the PACE trial, which purported to have proven the benefits of graded exercise therapy (GET) and cognitive behavior therapy (CBT) in treating what what the investigators called “chronic fatigue syndrome.” I noticed Tom’s name popping up in various journals in the form of correspondence or online comments critiquing the published research. These communications were invariably right on target, cogently argued, and pretty much irrefutable.
They were also excruciatingly polite, absent any hint of snark even when Tom was busy rebutting self-evident methodological failings or unwarranted claims. I admired Tom’s restraint. (In contrast, I generally found it hard to resist temptations to insert some clever-in-the-moment retort to obvious nonsense.) Beyond that, I was amazed, given how sick Tom had been for many years, at his persistence in what appeared to be the Sisyphean effort of pushing back against the propaganda from the GET/CBT ideological brigades. In the PubMed database, a search for his name yields an impressive list of 21 comments and other publications in peer-reviewed journals. Most he authored himself; on six, he was a co-author.
Tom’s input helped me enormously as I navigated the data manipulations behind the reported PACE results, and he served as a key source for my 15,000-word account. (That piece, which appeared on Virology Blog in October, 2015, launched this ongoing Trial By Error project.) Since then, Tom and I have been in regular contact and have met twice over the years in Dublin, when I stopped by the house he shares with his parents for some tea and biscuits and conversation.
With that history, I was really glad to be able to come to Ireland in October at the invitation of the Irish ME/CFS Association to talk to audiences around the country–just as physicians William Weir and Nigel Speight, both ME/CFS specialists, have done in the last couple of years. The talk was called “Bad Science, Bad Medicine: How Flawed Biopsychosocial Studies on ME, Long Covid and Related Illnesses Harm Patients.”
I arrived in Dublin after a short flight from Paris, on the evening of Saturday, October 19th, amid some air turbulence and reports of major windstorms sweeping across the country. On October 20th, the day of my first talk, the wind whipped so wildly that trees bent half-way over and people gripped by the gusts skittered along the pavement with umbrellas blown inside out. And then it rained heavily on and off throughout the rest of my stay, which ended on Tuesday, October 29th, with an early morning bus from northwest Ireland directly to Dublin airport for a flight to London. Weather notwithstanding, I had a great time. I spent hours wandering around some narrow city lanes, passing through very wet and beautiful countryside, and observing how Ireland parties on Halloween.
After events in Dublin and in Bray, a seaside town south of Dublin, I headed southwest to Cork, and then north from there to Limerick, Galway, and Sligo. In each city, I was greeted warmly by a local host and spoke to a curious and engaged group of attendees, generally a mix of patients and carers. I appreciated that they braved some raw weather conditions to hear what I had to say! The Dublin talk was recorded, and an edited version should be posted at some point.
In the talk, I highlighted the kinds of problematic research and reporting strategies deployed by investigators of psycho-behavioral interventions, and enabled by like-minded colleagues and journal editors, to gussy up unattractive results and amplify questionable carguments about efficacy. I have blogged about these problematic research and reporting strategies in multiple posts. As listed on Slide #8 of the talk, they include:
*Outcome-switching
*Claiming success based on secondary outcomes
*Ignoring/dismissing objective findings
*Interpreting associations as causal in their favored direction
*Extrapolating to populations not included in the study
*Statistical significance vs clinical significance (MCID: “Minimal Clinically Important Difference”)
*Pairing article with friendly commentary to amplify bogus claims of success
*Being promoted in a positive light by university public relations departments
*Reliance on inadequate control groups—or no control group at all
*Peer reviewing and publishing each other constantly
*Disclosed or undisclosed conflicts of interest–ie links with disability insurers, govt agencies
In the talk, I then discussed three separate clinical trials as examples of how these strategies have been deployed. These were the PACE trial, the REGAIN study of a multi-disciplinary intervention for Long Covid, and the CODES study of CBT for dissociative seizures, a form of functional neurological disorder. I have previously reported on all of these cases, documenting how poor findings were hyped as evidence of clinical efficacy. (I was surprised that many attendees knew nothing about PACE, or vaguely knew only that its findings couldn’t be trusted without having any idea why.)
You can view all the PowerPoint slides for the talk here. And enormous thanks to all involved in organizing and arranging my visit!
Thank you for coming to Ireland and raising awareness of ME and the flawed research.
I’m glad you enjoyed your trip. The weather is much calmer and dryer since you left! Hardly a breeze or a drop of rain!
It appears that last week, on mainstream national UK TV, a doctor suggested to viewers that 1 in 4 patients presenting to primary care are misusing GP time with trivial complaints/health anxiety issues and that, since they are diverting appointments away from those who truly need them, they should perhaps be banned if they offend twice in that way (see here -https://www.dailymail.co.uk/news/article-14059539/GP-patients-social-media-wasting-appointments-ailments.html and here -https://x.com/GMB/status/1854810117121720599). So that’s banned now, rather than gaslighted? I’m trying to weigh up which of gaslighted or banned might be better for patients’ health – CBT vs no CBT, enforced exercise vs no enforced exercise, regularly gaslighted vs no nasty gaslighting etc – but doctors working in the private sector may do well to remind themselves that patients are their customers and banning them from any care, state-funded or private, might cause them to despise medics in general going forward. If the proposed ban was enacted, I imagine that the medical profession could easily become the most hated and least trusted profession in the UK. Even more alarming to me was that it looks like 71% of those who took part in the audience poll voted in favour of GPs being able to ban patients, despite another GP having put forward some very good reasons for why a ban shouldn’t be imposed. (Going by how US citizens voted recently, I suppose I shouldn’t be surprised. Divide and conquer seems to be a pretty successful strategy these days. I’m just waiting for the day that doctors accuse patients of eating their dogs…)
While it’s possible that symptoms that remain unexplained after consultation and basic testing may account for up to a quarter to a third of primary care consultations, I’d really like to know what evidence there is for 1 in 4 patients, (according to the article that’s patients rather than consults), wasting GP resources through trivial complaints/health anxiety in the way that seems to have been suggested. To my mind, we’re entering extremely dangerous territory here that could have profound implications for public health and especially women’s health (since doctors expect far more women than men to have medically unexplained symptoms). The public relies on the news media to do a good job and to challenge and scrutinize ridiculous or potentially damaging claims but these days, when it comes to medicine, news people and journalists seem to fall at doctors’ feet and take everything they say as being correct and well-evidenced.
Thank goodness there are a few who don’t and who take the time to dig deeper and challenge what’s put out. Thank you, David, for all that you’ve done and continue to do in that regard – including what’s on the Irish talk slides but so much more besides.
Wonderful update and good to hear our community coming together so beautifully. Sounds like you came in on the winds David! I like the progress the Irish ME association has done and would love to try out the VR set project and see it rolled it. Something on my wish list for escapism on the loneliest days. 🦋
Wonderful update and good to hear our community coming together so beautifully. Sounds like you came in on the winds David! I like the progress the Irish ME association has done and would love to try out the VR set project and see it rolled it. Something on my wish list for escapism on the loneliest days. 🦋
Thank you for traveling far and wide to explain to all the bad research you and Tom and others have exposed.
I read this article. I think You put a great deal of exertion to make this article. I like your work
Cool stuff you have and you keep overhaul every one of us