By David Tuller, DrPH
In an interesting and unexpected development in the ongoing saga of my dispute with the University of Bristol, the chief executive of the National Health Service’s Health Research Authority sent a gracious note about my work to Carol Christ, the chancellor of the University of California, Berkeley, on Wednesday, October 31. I did not ask the HRA to send such a letter, so I was surprised–and pleased–when my department head forwarded it to me.
Berkeley has strongly supported my right to make my case. No one from my department or the university has questioned my integrity or the accuracy of my investigative reporting on the methodological and ethical lapses in this domain of scientific inquiry. Half a dozen of my faculty colleagues have signed various open letters I have organized. Having said that, it certainly doesn’t hurt to have the regulatory agency overseeing research ethics for the NHS express official appreciation for my role in this academic dispute.
I recognize that, in many ways, the HRA’s purview is limited, as the letter to Berkeley suggests. Perhaps those limitations need to be analyzed and addressed. I also have questions about the independence of the supposedly “independent” panel commissioned to review these Bristol studies. And I believe the mandated remedies–corrections in the ethics statements of all eleven studies–are inadequate.
My gut sense–which is not grounded in any specific information–is that this report represented some sort of perceived compromise solution. After all, no one could reasonably dispute the documented facts–just as no one can reasonably continue to dispute that President Trump was engaged in a quid pro quo with Ukraine. But let’s put all that aside for the moment; I will elaborate on these concerns at a later point.
The HRA was aware of the Bristol vice-chancellor’s complaints to Berkeley about my “actions and behaviour.” So I very much appreciate that Teresa Allen, the chief executive, took the initiative to alert Berkeley to the outcome of the investigation. She did not have to do this. She presumably understood that Berkeley would interpret the letter as vindication of my position. I am therefore deeply grateful that she went out of her way to keep the chancellor of my academic institution in the loop. It means a great deal to me.
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Here is the letter:
Dear Chancellor Christ,
You may be aware that we recently responded to concerns that David Tuller shared with us about several research studies involving patients with CFS/ME. This response, made in line with our processes for complaints and concerns, has taken a significant amount of time as we have had to work across a number of organisations and we are grateful to David for his patience. As the concerns raised with us were wide-reaching, unfortunately we were unable to answer questions which fell outside the remit of the Health Research Authority (HRA). You can read a full statement on our website https://www.hra.nhs.uk/€¦/outcome-expert-panel-review-eleve€¦/
We have identified and implemented a number of improvements to procedures as a direct consequence of David€™s concerns together with similar questions raised by other individuals. We constantly review, with our Research Ethics Committees, the ways in which we work to ensure that they remain fit for purpose, and we are grateful when potential issues are brought to our attention.
We fully understand and support the need for more comprehensive research into this dreadful condition which affects so many people€™s lives.
With Regards
Teresa Allen
I think Horace describes your efforts perfectly
“The man who is ‘tenacious’ of purpose in a rightful cause is not shaken from his firm resolve by the frenzy of his fellow citizens clamoring for what is wrong, or by the tyrant’s threatening countenance.â€
You have definitely ruffled more than a few feathers. Thank you.
I can’t imagine you, David, had any idea that this is where you’d be when you first started to look at this disease x number of years ago? One thing is for sure, your part in exposing the egregious lapses in ethics and protocol wrt papers published by the UK BPS/ Wessely School, is assured, & in a good way. Those you have exposed are also assured their place in the historical and political narrative of the disease, but in a (very) bad way. I guess the HRA has decided which side of the fence they’d prefer to be. Now they’ve ‘jumped’ let’s hope they start to knuckle down and properly investigate, for their own satisfaction as well as ours, quite how badly UK medical science has succumbed to political interference and dumbing down.
One short letter to one august academic establishment, whilst extremely helpful from David Tuller’s pov and simultaneously (by inference) dismissing the trumped up charges levelled at him from Esther Crawley and Bristol Uni, is not enough to wipe their own slate clean. They have a long, long way to go to redeem themselves in this charade.
But great news that Tuller has been proven blameless… those of us on ‘this’ side of the fence always knew he was!
“David Tuller shared with us”
“we are grateful to David”
“we are grateful”
Intimidation has completely failed to stop Dr Tuller’s posts, so now they want to be “Best Buds”? What a bunch of losers! I predict their new strategy of attempting to co-opt Dr Tuller will also fail to stop the criticism.
It’s true a new coat of paint hides a lot of sin, but the rot is still underneath. ME patients are still left to struggle in isolation even as young people with ME are kidnapped and forced into harmful treatments with HRA’s approval.
HRA’s refusal to act to protect patients is in the public record. They are moving beyond incompetence and into the realm of deliberate indifference to the fraud taking place under their very noses. I suspect olfactory fatigue. The stink of corruption and incompetence throughout society is so strong that a bit more is hardly noticed.
The letter is a nice touch but it would be nicer still if the HRA hadn’t at the same time closed the case – ‘no more to see here, move along’. I too am concerned about the lack of independence of this investigation and a whitewash wrapped in grace and delivered with a bow (to the truth) on the top is still a whitewash in my book.
What does this all mean going forward for Crawley and other researchers-who-are-immune-from-consequences? What precedent does this set, now that the facts have been acknowledged and there has been no consequences? Green light for all future ethical violations? Violations are now mandatory?
Because we all know there will be more such violations in the future, likely even in the present and ongoing. Among the many lowered standards that PACE set, it’s that such violations are A-OK and it’s nobody’s responsibility, always in another department or agency. Which department or agency? Can’t tell you because “controversy”.
The existence of a “controversy” is not a reason to hand-wave this, since researchers like Crawley are themselves the controversy. It is similar in nature to HIV deniers and people who still think the refrigerator mothers model is still valid as the explanation for autism.
It’s not so much that there is controversy as the fact that there are jerks who insert themselves into topics on which they have neither understanding nor even a basic involvement in the stakes. If that is the standard moving forward, then nearly all topics are controversial, including the safety of smoking and the curvature, or lack thereof, of the Earth.
Just because politics has tipped the scales and bullied through the controversial people’s very bad ideas does not change the basic facts that it is the presence of deniers-who-should-find-better-hobbies-than-ruining-people’s-lives that is the whole of the “controversy”. Nobody wants them there, they are uninvited, and very rude, guests, like ticks on a dog’s back, except way more gross.
Because as usual, the patients are ultimately irrelevant to the matter, a sideshow that only those objecting to the people-with-very-bad-ideas-inserting-themselves-on-a-topic-they-do-not-understand take into account. The facts are now indisputable that the consequences here are a complete and total failure, amounting to a human rights disaster.
I do not understand how that does not factor in at all. It’s as if the ongoing discussion behind the scenes treated reality as hypothetical and distant, ultimately of no importance by way of carefully controlled and very poorly run experiments that make a mockery of the scientific method and pay no attention to actual reality, even less so to the welfare of people maligned by the people with very bad ideas.
Hindsight will look back at the HRA decision with contempt at the moral cowardice on display despite clear facts that they did not even dispute, yet judged of no consequence. I’m not sure how these people expect this to be settled when there are still millions being harmed by the mere presence of the people with very bad ideas, whose egos and wants are elevated above the needs and safety of millions for reasons that remain unexplained.
Anyway, to the HRA, there is only one valid response, despite this letter: boo. Boo to all of you, tasked with protecting the vulnerable and instead siding with the bullies. Boo to all of you, failing at the most basic aspects of your duties. Boooooooooooooooooooo.
Feeling grateful to Therese Allen feels wrong but I’m still glad to see it.
I’m sick and tired to seeing people capitulating but at the same time rolling on with the status quo. Acknowledgement and accountability of the harms caused to so many people would be a start.
Eight years ago Dr Tuller wrote:
“…over the past quarter-century, the CDC’s research program has yielded little or no actionable information about causes, biomarkers, diagnostic tests, or pharmaceutical treatments. Nor has the agency done much to track long-term outcomes–such as cancer rates, heart attacks and suicides–among people with the illness.” [1]
Those same words could have been written yesterday, and there is little sign that there will be anything different to write in another eight years. How is it possible to have such a complete system failure simultaneously in every nation state on the planet? And how is it possible that so few notice?
[1] https://virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/