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

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.

 

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?

 

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:



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!]

 

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.

 

The signatories of the letter are from 6 countries (all but 1 English speaking). I wonder if in future, it would have more weight to have signatories from more countries, to show how much interest there is.

 

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

Code:

https://www.facebook.com/actionforme/posts/10156460043698209

 

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.

 

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.".

 

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.

 

@dave30th What is the best way to get in contact if organizations would like to be added as signatories, a mail to virology(at)virology.ws?

 

The Lancet are not learning the lesson about subjective measures in unblinded CBT trials. Just look what they published in Lancet Neurology yesterday... *sigh*

 

I'd be interested to know what they said too... @dave30th ?

 

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.

 

'Nothing new'? Rather like every one of their responses to date, then.

 

Happy dance

This would be an interesting anecdote for Carol to know about