By David Tuller, DrPH
The reporter writing the story I posted about earlier also contacted Professor Racaniello. Here are the questions asked, and his answers:
Could you please say why David Tuller publishes his blog posts on your site, instead of publishing it on a blog/website of his own?
A number of years ago a retrovirus was suspected to cause ME/CFS. I began writing about the research into this association on my blog and it attracted many hundreds of readers from the ME/CFS community. The posts caught David Tullerâ€™s attention and we began to correspond. Then he asked if he could publish his long analysis of the CDC’s role in the history of ME/CFS on Virology Blog. It made sense to me because many of the ME/CFS patients remained as readers even though the retrovirus association with the disease had been debunked. When he talked to me about publishing his PACE investigation, it seemed like a good follow-up. I also continue to write occasionally on the disease as research emerges.
How would you describe David Tullerâ€™s campaign? Do you support what he is doing? And have you made any contributions to his crowdfunding?
David Tuller is doing important investigative journalism–he is exposing the flaws in the PACE trial for ME/CFS and along the way is encountering incorrect and unethical practices in other studies on the disease, including a series of pediatric studies from Bristol University. I fully support his work as do the many other scientists, epidemiologists, and physicians who have signed his open letters. PACE was a poorly designed and executed clinical trial. Open label studies with subjective outcomes are inadequate for making policy decisions because it is impossible to know how much the responses are infused with bias. And if trial participants can meet outcome thresholds at baseline, as happened in PACE, that automatically invalidates the work as legitimate science.
The PACE trial illustrates exactly how NOT to conduct a clinical trial. My Columbia colleague, biostatistician Bruce Levin, recently gave a talk on that issue with PACE as the case study. Yet the authors and the journals refuse to admit the studyâ€™s flaws. Lancet editor Richard Horton solicited from us a letter for publication detailing our criticisms of the trial, and then it was rejected with a form letter. When I inquired, I learned that it was rejected based on a veto from the PACE authors. To be fair, a third party should have evaluatedÂ .
I have contributed twice to Davidâ€™s crowdfunding campaigns as a show of support. Itâ€™s the least I can do, as he is not paid for any of his articles at Virology Blog, except through his crowdfunding.
You refer to David Tuller in your Oct 19thÂ blog post as â€œDr Tuller.â€Â David Tuller has told me he has no medical qualifications and is not a doctor. I understand his [sic] gained a masters in public health in journalism at Berkeley in 2005, and wonder if this is why you refer to him as â€œDrâ€?
[The reporterâ€™s mistaken assumption that I only have a masters degree was actually my fault. It turns out I had never updated a faculty page at Berkeley, so the reporter understandably assumed the information on it was correct. Rather than checking the discrepancy with me, however, the reporter asked Vincent about it in what seems to be an attempt at a â€œgotchaâ€ question. I have since updated the page.]
Being an MD is not the only way to earn the appellation â€˜Dr.â€™ Surely you must know that people who earn a PhD, or any doctorate, are also called â€˜Dr.â€™ David has a DrPH degree from Berkeley.
Could you tell me please whether you have suffered with CFS/ME, or whether you have friends or loved ones with the illness?
I do not suffer from ME/CFS. My younger son has some of the signs of the disease but has never been medically diagnosed with the illness.
These questions do not appear to be aimed at getting a better understanding of the science that David is investigating. You should talk to some other experts who support his work on PACE and other research:
Jonathan Edwards (University College London):Â firstname.lastname@example.org
Peter Rowe (Johns Hopkins):Â email@example.com
Ronald Tompkins (Harvard):Â firstname.lastname@example.org
Brian Hughes (National U. of Ireland, Galway:Â email@example.com
Bruce Levin (Columbia):Â firstname.lastname@example.org
I will be pleasantly surprised if the story ends up including comments or information from any of the four experts mentioned by Professor Racaniello.