By David Tuller, DrPH
Added Feb 12:
I realized today that I wanted to add a couple of details. The new version of the BMJ article about the Health Research Authority analysis of PACE includes this sentence at the bottom: “Correction notice: On 8 February 2019 a new version of this article was posted with clarifications added.”
For unexplained reasons, no further details are provided about what was corrected or clarified. Readers would therefore not know that the initial description of my role omitted my academic credentials altogether and referred to me solely as “a US activist.” Nor would they know that the BMJ article originally referenced only “activists” as being opposed to PACE–and that it did not cite Virology Blog’s open letter to The Lancet, which was signed by more than 100 academics and other experts and slammed the study’s “unacceptable methodological lapses.”
I empathize with BMJ’s position. For a leading medical journal to have disseminated this kind of misleading information is embarrassing, and rightly so. But omitting details of corrections and/or clarifications is not the most transparent way to correct or clarify the published record. Just saying.
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Last Wednesday, the UK Health Research Authority released a letter reviewing its analysis of the PACE trial. Members and supporters of the GET/CBT ideological brigades have misrepresented the HRA letter as a vindication of the study. On Thursday, BMJ posted an article about the HRA letter by science journalist Nigel Hawkes.
The BMJ article quoted from a Virology Blog post. After my byline on that post, I had included as always the initials for my public health doctoral degree–DrPH. Yet BMJ identified me as “a US activist” without mentioning my academic credentials and my position at one of the world’s leading research universities.
The pro-PACE experts quoted in the BMJ article were appropriately recognized for their professional roles at prestigious British institutions. The article also attributed opposition to the trial solely to “activists,” as if no epidemiologists, biostatisticians, infectious disease experts, physicians and specialists from other relevant disciplines have lambasted PACE for its unacceptable methodological lapses.
The day the article appeared, I sent an e-mail to Dr Fiona Godlee, editorial director of BMJ, alerting her to the problem with how I was identified and requesting a prompt fix. (See end for the text of this message; I posted it last week on Facebook.) I know I was not the only one to express concerns.
On Monday morning I received a response from Dr Godlee. She noted that BMJ had added a reference to my academic position as well as a mention that other academics have criticized PACE. All good. The changes are helpful. I appreciate Dr Godlee’s willingness to make them without delay.
However…the revised version continues to describe me as “a US activist,” and that phrase precedes the new reference to my Berkeley title. To be clear, I view “activism” as an essential ingredient in effecting critical social change, including in the health and medical spheres. In the current debate, I am happy to be regarded as an “activist” on behalf of science that meets minimal standards of integrity and logic–which PACE does not, in my professional opinion as a public health academic from the University of California, Berkeley.
In contrast, the use of the word “activists” in the BMJ article appeared intended as dismissive. The story positioned the “activists” questioning PACE against impeccably credentialed pro-PACE professors. Given that, the decision in the current version to single me out among the quoted experts as also being an “activist” seems like a signal to readers that my opinions might not warrant much consideration.
As a public health academic and professional, I am advocating for what I perceive to be in the best interests of patients. The esteemed professors applauding the HRA letter in the BMJ article are also advocating for what they presumably perceive to be in the best interests of patients. They are no less “activists” on behalf of their perspectives than I am on behalf of mine.
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Here’s my Thursday e-mail to Dr Godlee:
Dear Fiona–
Last time I checked, I was an academic appointee at the University of California, Berkeley, with a doctorate in public health. I have included my official title in my sign-off in every letter I have sent you.
Can you please then explain why BMJ has described me in its article on the Health Research Authority report as “a US activist”? This isn’t surprising, of course, given the mass delusion in the UK medical and academic establishments that PACE is a quality piece of work. Since I am willing to state openly that it is “a piece of crap,” I guess that automatically signals to people like Nigel Hawkes that I must be an “activist.”
Now, there’s nothing wrong with being an “activist,” and I don’t deny that my work involves public health advocacy. But it is inaccurate and unacceptable to describe me as an “activist” while omitting my academic credentials and the fact that I have a position at one of the world’s leading universities. Of course, the article did include the academic affiliations of the other experts quoted–but they happened to be saying nice things about PACE.
Hm. Do you think BMJ might have a bit of a blind spot on this issue?
A correction or clarification is obviously in order. I appreciate your prompt attention to this issue.
Best–David
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
Comments
7 responses to “BMJ Amends Last Week’s PACE Article”
The BMJ needed to be called out over this but it’s a shame that they couldn’t correct it properly.
It’s interesting to see how the BMJ deals with the responses it receives. Andy Dearden (Professor of Interactive Systems Design Sheffield Hallam University ) appears to have submitted his response on 8th February, but Ellen C Grant’s response that was submitted on 10th February appeared online first and has remained at the top with Professor Dearden’s below, ensuring that Prof Dearden’s response never filled the top position. Prof Dearden makes some very good points about Hawkes’ article, including noting that David Tuller had been referred to as ‘a US activist’ without mentioning his position or academic credentials.
I wonder though – How many responses to the Hawkes article will be rejected by the BMJ without any reason given? That seems to be what BMJ journals do.
Excellent response. As they represent the established order it is to be expected that they would not have a neutral or positive perception of those working for change. However it would appear an enormous failure on their part to so openly reject journalistic convention. I appreciate the clear succinct explanation of why being labelled an activist is problematic, even while being one is not. What gross mischaracterisation they display when presenting one side -theirs- as educated and not the other -yours- where no such distinction exists. Such misconduct would seem to be alarmingly common to those without empirical evidence on their side.
This behaviour from the BMJ, is sadly the same that is adopted by those who hold so called esteemed places in the powerhouses of our society. Perhaps this is how they have been allowed to continue, because there is no accountability and those that promote patient involvement, truth, integrity and honesty are toothless facades.
BMJ, should be held accountable for their inability to engage with debate and find the facts to support those that end up suffering as a consequence of bad trials and published papers. As Retraction Watch have now issued that five journal that are retracting a prominent cancer researcher’s papers (now up to 28 I think) they apologies for the delay. The author had threatened to sue them, and they have PACE in their sights it would appear.
I shudder to think if another epidemic such as AIDS hit us, the theory that perpetuates the nonsense around ME and that of Gulf War Syndrome of “illness beliefs” and that of “mass hysteria” would swallow up the truth and we would be fighting as atavists once again to protect those that suffer at the hands of arrogance and greed.
You will be seen as the Martin Delaney of the ME community and a public health hero. All those that confounded ME will be seen as the shameful witch-hunters of the 20th Century as they say – hindsight is a marvellous thing. We seem unable to use past failings to adopt better practice and understanding.
The other worrying factor is the way, with all our knowledge denialism is supported giving false hope to people who suffer that all they need to do is follow their insistence and without finding all the facts about their illness, to exercise and deny their symptomology. With all our knowledge of all the illnesses that cause the same sort of symptoms we deny proper, compassionate and considered care to very young people with ME.
I shudder to think what state the diabetic community would be in if they had not found the problem with the pancreas way back in 1889, because with today’s inability to accept the patient’s reality, there would be no hope of finding the facts. We still do not know fully how diabetes happens and why. If we contemplated that fact for a few moments that should stop such trials on activity with children and their families, when we know that somewhere there is a defect in an ME patient’s ability to sustain activity.
What saddens me the most is that it left to mothers like me to pick up the pieces. How many more Sophia Mirza and Merry Crofts must there be? How many tube fed children forced onto normal wards with their eye masks and ear defenders take away, left in unbelievable pain as nurses and doctors walk on by in their belief this is just as a result of deconditioning. Threatening to take the children away from desperate mothers who constantly show the evidence of this illness, yet the doctors believe in BMJ derogatory activism rhetoric and believing those that deny ME is first and foremost a physical condition.
What would they have me say to those that suffer the most like my son who asks why? “Why do doctors hate me so much mum, what do I have to do to prove it is not me, but because I’m ill. I try mum I do try”.
I am an activist and I stand by David. You can name call us names and try and discredit us, you can make fun and call us MUPPETS for now. But what are the journals going to do when the “truth will out”?
Sending this letter to Lamb is a predictable establishment move to prevent, at all costs, the potentially catastrophic consequences of acknowledging PACE was flawed…pulling out the biggest brick in the wall supporting CBT/GET. If these are removed from the NICE Guidelines, which is what Monaghan and her supporters have formally passed a motion in favour of, the potential then arises for admission that patients have been being harmed, knowingly, by the promoters of those treatments. This potential cascade of consequences absolutely must be prevented and the British establishment will make sure of that, starting right here.
Convince Lamb, or provide him with support for silencing critics of PACE, so that NICE can keep CBT/GET in the revised Guidelines, keep the BPS model and the psychiatrists who support it firmly in charge, and they will be able to sleep peacefully.
Not so much the mother on FB whose son, after three years of GET, is now onfined to a wheelchair, no longer able to keep up the attendance at school that he used to manage before the treatment began….who ‘just doesn’t know what to think’
http://www.positivehealth.com/article/cfs-me/lost-in-translation-the-me-polio-connection-and-the-dangers-of-exercise
http://www.positivehealth.com/article/cfs-me/what-can-we-expect-from-the-current-review-of-nice-guideline-cg53
http://www.positivehealth.com/article/cfs-me/me-cfs-advice-for-2019
I think it’s a very inappropriate attitude from the Pacetrial proponents. Please behave and keep your eyes on the ball.
As always, so grateful for your work, David Tuller DrPH.
Re my comment awaiting moderation….I’d really value your judgement on my articles..whether they help or hinder the incredibly important work you are doing Advice very much appreciated.