Trial By Error: The Reporter’s Questions for Professor Racaniello

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 Tuller’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 Tuller’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 study’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 evaluated .

I have contributed twice to David’s crowdfunding campaigns as a show of support. It’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 19th blog post as “Dr Tuller.” 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 “Dr”?

[The reporter’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 “gotcha” question. I have since updated the page.]

Being an MD is not the only way to earn the appellation ‘Dr.’ Surely you must know that people who earn a PhD, or any doctorate, are also called ‘Dr.’ 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): jo.edwards@ucl.ac.uk

Peter Rowe (Johns Hopkins): prowe@jhmi.edu

Ronald Tompkins (Harvard): rtompkins@mgh.harvard.edu

Brian Hughes (National U. of Ireland, Galway: brian.hughes@nuigalway.ie

Bruce Levin (Columbia): bl6@cumc.columbia.edu

**********

I will be pleasantly surprised if the story ends up including comments or information from any of the four experts mentioned by Professor Racaniello.

{ 14 comments… add one }
  • Allison Haynes May 31 January 2019, 5:24 pm

    And… here again we see the usual tactic of a guilty party trying to cover his/her ass : instead of addressing the medical & ethical questions at hand, this person is looking for ways to attack David and his credibility.
    To borrow a phrase from David’s earlier post today, this “creates the strong impression that [this reporter] is more concerned with avoiding reputational damage than protecting children’s health”.
    Thank-you Vincent Racaniello for standing up for David’s integrity and excellent reputation.
    Many thanks as always to David for his strong and thorough work for people with M.E. and for his continued allegiance to the truth.

  • Scott Simpson 31 January 2019, 5:58 pm

    If / when they publish the attack article against David, the real narrative should be about why this reporter chose to attack David, and by extension ME patients.

    I wonder what sort of social / political / financial pressure the reporter must be under to gutter their own career?

  • Couch Turnip 31 January 2019, 6:09 pm

    Could the reporter please say if they have read all of David Tuller’s blogs in their entirety?

  • Leela Play 31 January 2019, 6:29 pm

    It seems the reporter intends to do a thorough impartial job of investigative reporting. (sarcasm). I wonder who has lead them into this and is directing the areas to write on.

  • Peter Trewhitt 31 January 2019, 7:02 pm

    Thank you Professor Racaniellofor for your ongoing support of this important work.

    On the basis of these questions, I have little hope of this journalist currently having any understanding of the relevant issues or of them having any intention of producing a balance article. However there is always a faint possibility that they actually read your responses and quote you fully in the article.

  • Lois Addy 31 January 2019, 7:15 pm

    these don’t seem unreasonable questions.t hey are asking why things are as they are. In the UK there was the Gillian wotsit lady who was on tv as a nutritionist, who claimed to be Dr from a pretty spurious institution and I think got lamped for it. Lesson in there for us all, keep online data about qualifications updated lol!

    I suppose we wait and see for the outcome. The good thing is they asked hte questions, they got the responses, so any slipperiness (can’t think of a better word) will be easily differentiated.

  • Lois Addy 31 January 2019, 7:17 pm

    oh I nearly forgot (and rudely didn’t say) I very much appreciate you giving space to David’s work on your blog Vincent. It allows him to write long form pieces which are needed with complex analyses of complex pieces.
    I do try and read the other blog posts not about me/cfs but I’m rubbish at science so it mostly bounces off.

  • Vincent Racaniello 31 January 2019, 11:08 pm

    Lois, I am honored to have David write here. I am glad to provide a forum for his important work. I appreciate that you try to read the virus posts but I realize that is not why you are here.

  • Joan Byrne 1 February 2019, 11:57 am

    It was a pleasure and an honor to meet David when he went to Newry, Ireland last year. We represented ME Advocates Ireland and attended on the invitation of Joan MacParland from HOPE for ME & Fibro. I hope some day to have the honor to meet you personally, Prof Racaniello. That would be another tick off my bucket list!

    Thank you for allowing your blog to be a platform for truth, integrity and science when it comes to Myalgic Encephalomyelitis. As far as the upcoming article is concerned all I can say is – Bring it On.

  • EzzieD 1 February 2019, 3:25 pm

    Thank you so much to David and to Prof Racaniello for standing up for science. 🙂

  • Sean 2 February 2019, 9:35 am

    Thanks to Prof Racaniello for his continued support.

  • Paul Watton 3 February 2019, 6:46 am

    It’s interesting that this journalist persists with questions about David Tuller’s qualifications.
    I believe that it was the same journalist who adopted the same dismissive line about his entitlement to be referred to as “Doctor”, when I was interviewed (by telephone) in September last year.
    I guess that my answer wasn’t what they wanted to hear.

  • JL 21 February 2019, 5:47 am

    Thank you so much for your ongoing support of David’s work. It is heartening to have someone who is not directly affected by ME standing with us.

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