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

Esther12 said:
You could always just copy/paste and then format it however you think would suit you best.
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Yes of course, but that involves me editing and re-presenting something that is not my work which somehow doesn't feel right to me. Formatted as a proper letter with full address of recipient at the top would more usefully serve the purpose @dave30th alluded to and that is beyond what I feel is ethically correct for me to do.
 
dave30th said:
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.
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These are great goals but we would need to make sure Carol and the others know about it so they can use it. Does anyone here know her personally and could forward it to her, and ditto for the other uses?
 
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Sean said:
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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I'd also like to see a proper analysis of that - but we need the whole dataset - and the quantity of missing data is concerning. I've already had a cursory look at what we have, but I no longer have the proper software to do anything fancy. But I did produce this:

PACE_6mWTvsPF.gif

The red dots that disappear are the data that are missing at 52 weeks. This leaves noticable gaps in the CBT and GET groups - which indicates that the drop-outs are important.

[update: clearer version is here - https://lucibee.wordpress.com/2017/01/03/playing-with-data/
but if anyone knows how to create hi-res gifs, give me a shout!]
 
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BruceInOz said:
Yes of course, but that involves me editing and re-presenting something that is not my work which somehow doesn't feel right to me. Formatted as a proper letter with full address of recipient at the top would more usefully serve the purpose @dave30th alluded to and that is beyond what I feel is ethically correct for me to do.
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As a signatory I have no problem generating this. It is not on a letterhead but then it was posted online. It may have glitches but not too many I hope. I have reduced the addresses of the signatories to three lines.
 

Attachments

Thank you, @Lucibee

Being able to do the correlation calculations is the most powerful argument for the full (anonymised) data set being released, at least to independent statisticians, if not publicly.

(And Cochrane's behaviour has ruled themselves out as independent.)

Can you post a higher res version of that image?
 
Well, I'm pleasantly surprised. If I remember correctly one of the reasons they gave last time for not signing it was that they hadn't been asked, didn't have time to consult with their board, and after they'd had their board meeting, subsequently didn't see the point in signing it so long after it was originally sent - so for Sonya to be as proactive as is stated in this Facebook post is a nice change.

Facebook post from AfME
Yesterday, Prof Vincent Racaniello, Columbia University, sent a letter to The Lancet about the PACE trial, asking the journal to “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.”

Having contacted David Tuller, who helped circulate the letter and published it on his blog, Action for M.E.’s Chief Executive Sonya Chowdhury has confirmed that she will sign it on behalf of the organisation. We understand that, over the next few days, the option to support the letter will also be offered to other charities and advocacy organisations.
[Goes on further to quote points from the letter itself]
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Code: 
https://www.facebook.com/actionforme/posts/10156460043698209

 
Andy said:
Well, I'm pleasantly surprised. If I remember correctly one of the reasons they gave last time for not signing it was that they hadn't been asked, didn't have time to consult with their board, and after they'd had their board meeting, subsequently didn't see the point in signing it so long after it was originally sent - so for Sonya to be as proactive as is stated in this Facebook post is a nice change.
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Very impressive. So if they sign why are they still playing games with our lives by playing both sides with GET/CBT advice?
@Action for M.E.
 
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Alvin said:
These are great goals but we would need to make sure Carol and the others know about it so they can use it. Does anyone here know her personally and could forward it to her, and ditto for the other uses?
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Following my email to her last night, Sarah at MEAction has replied saying, in part, that she "managed to circulate it to all the MP's that we expect to be there tomorrow, and supporters of Carol's back bench application.".
 
anyone else getting an error message to the AFME facebook post?
Sorry, this content isn't available at the moment
The link you followed may have expired, or the Page may only be visible to an audience that you aren't in.

their message is still up on Twitter and the website
 
Alvin said:
These are great goals but we would need to make sure Carol and the others know about it so they can use it. Does anyone here know her personally and could forward it to her, and ditto for the other uses?
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Yes, Carol Monaghan is aware of it. The Australians involved are aware of it. It will be shared with reporters as well. Anyone can share it with their insurers and doctors.
 
NelliePledge said:
was there ever a response to the 2016 letter?
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So what happened first was an open letter in November, 2015, a month after the series ran. That one was signed just by the five experts I quoted, plus Vincent as Virology Blog host. Vincent got a note back from Horton's office that Horton was "traveling" and would respond when he got back from this "traveling." Vincent nudged him a couple of weeks later but never heard anything further.

Then we reposted the letter with 42 signers in February, 2016. I wanted to make sure that was sent and posted so that Alem Matthees could include it in his docket of evidence for the tribunal hearing that spring. The day it was sent, Horton wrote to Racaniello and invited the group to submit a letter for publication, with the PACE authors to be given a chance to respond. So we prepared another letter to meet the publication format, edited it based on input from the group, and submitted that with 43 signatories. We heard nothing. A couple of months later, it was rejected by form letter. When Vincent wrote to the journal noting that this letter had been solicited directly by the editor, we heard back from the correspondence editor that the journal had run the letter by the PACE authors, who had said it contained nothing new. Therefore, they had rejected it.

In other words, after soliciting a letter from dozens of busy academics, the journal gave the PACE authors veto power over publication. That's why this letter was not written with any expectation of an appropriate response from Horton.
 
dave30th said:
That's why this letter was not written with any expectation of an appropriate response from Horton.
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thanks for the reminder I remember seeing your blog about the second letter at the time. I had only been diagnosed 5 months before that. I cant remember how I picked it up but the fact a bunch of top scientists were concerned was one one of the first things that made me realise all was not as it seemed in the NHS world of CFS.
 
NelliePledge said:
Carol M has also tweeted that she is in touch with Dave T
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dave30th said:
Yes, Carol Monaghan is aware of it. The Australians involved are aware of it. It will be shared with reporters as well. Anyone can share it with their insurers and doctors.
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Happy dance :emoji_man_dancing::emoji_dancer:

dave30th said:
In other words, after soliciting a letter from dozens of busy academics, the journal gave the PACE authors veto power over publication. That's why this letter was not written with any expectation of an appropriate response from Horton.
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This would be an interesting anecdote for Carol to know about :jawdrop:
 
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