David Tuller: Trial By Error: An Open Letter to The Lancet, Two Years On

Andy

Retired committee member
This morning, Professor Racaniello sent the following e-mail to Richard Horton, editor of The Lancet. The subject heading: “Another open letter about the PACE trial.” He cc’d the three lead PACE investigators and the public relations office at Queen Mary University of London. Virology Blog’s previous open letter to The Lancet about the PACE trial was sent and posted in February, 2016.
http://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/
 
Mike Godwin has signed this:thumbup::D
Interesting, as an attorney he probably doesn't want to lose his license by parroting alternative facts.


Thank you for your quick attention to this matter.

I think we should start a betting pool on how quick it will be and how accurate. My money says not very, though i hope to be wrong.
Where should the betting pool money go, David Tuller, OMF, Millions Missing?
 
I still think that without any valid objective measures, re-analysis is almost completely pointless, as it will only repeat the errors that were made during the trial.

What is needed is an inquiry - one that has the power to contact and re-interview all the participants, to find out exactly how much harm has been done.
 
Mike Godwin has signed this:thumbup::D

LOL.

I still think that without any valid objective measures, re-analysis is almost completely pointless, as it will only repeat the errors that were made during the trial.

What is needed is an inquiry - one that has the power to contact and re-interview all the participants, to find out exactly how much harm has been done.

I assume that is what's being requested, eg my emphasis: "Subsequently, in February of 2016, many of us signed an open letter to The Lancet requesting an independent investigation of the study."

This sentence could make that less clear, but I can't imagine anyone at the Lancet would think that they could just get away with looking at the data and ignoring all of the other problems around the trial: "Given the worldwide impact of PACE, we urge The Lancet to do what the open letter two years ago requested: commission an independent re-analysis of the individual-level trial data, with appropriate sensitivity analyses, from highly respected reviewers with extensive expertise in statistics and study design."
 
Did no-one from AfME want to sign it? @Action for M.E. ?
My guess would be that there are relatively few new signatories to this, as there is a note of thanks to Mary Dimmock right at the end
(Many thanks to Mary Dimmock for helping to contact the signatories.)
so I'm guessing they just contacted those who signed previously.

Given that they managed not to sign the first one, even if they were contacted I'm sure we would have got sufficient dragging of feet from them so that they missed the deadline, as they did previously.
 
My guess would be that there are relatively few new signatories to this, as there is a note of thanks to Mary Dimmock right at the end so I'm guessing they just contacted those who signed previously.

I haven't tried to compare all of the names side-by-side but I did notice that Dr. Derya Unutmaz of The Jackson Laboratory for Genomic Medicine was new to this letter. The previous letter preceded the grants made to Dr. Unutmaz and his lab for the study of ME/CFS which were made by the NIAID and NIH in 2016 and 2017 respectively.

Dr. Unutmaz has made a very positive impression on me in the talks I've seen posted on the internet about his ME/CFS work.
 
The idea is to re-post the letter in the near future with organizations added. So Action For ME will have a chance to decide along with other groups whether it wants to add its name. I will be curious what they decide to do.

In terms of the goal of the letter--I wouldn't say that getting The Lancet to actually do some sort of investigation is the goal. I mean, that would be nice, but it's unrealistic--it's clear that Richard Horton is not capable of acting with integrity on this issue. So from my perspective the larger goal is to provide Carol Monaghan with more backing when she talks in Parliament. It's to influence the GP association in Australia that has refused to review its guidelines and still recommends CBT/GET. It's to demonstrate to the health officials at the CDC what it means to take a stand on an issue. It's so patients have a document they can show their doctors and insurance companies when they try to insist on CBT/GET. Etc.
 
"Given the worldwide impact of PACE, we urge The Lancet to do what the open letter two years ago requested: commission an independent re-analysis of the individual-level trial data, with appropriate sensitivity analyses, from highly respected reviewers with extensive expertise in statistics and study design."
I want to see the correlation calculations between the subjective self-report and the objective outcomes. That is what will seal the deal.
 
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