Trial By Error: A Letter to Archives of Disease in Childhood

prof. Vincent R. Racaniello
Lisa F. Barcellos, MPH, PhD
Robin Callender Smith, Phd
Lily Chu, MD, MSHS
Ronald W. Davis, PhD
Jonathan Edwards, MD
Valerie Elios Smith
Rebecca Goldin, PhD
Leonard Jason, PhD
Michael Kahn, MD
Nancy Klimas, MD
Bruce Levin, PhD
Steven Lubet
Marlon Maus, MD, DrPH, FACS
Patrick McKnight, PhD
Zaher Nahle, PhD, MPA
Philip Stark, PhD
John Swartzberg, MD
David Tuller, DrPH
William Weir, FRCP
Carolyn Wilshire, PhD

Thank you!
 
Let's hope that this flawed SMILE study proves to be the reductio ad absurdum of the BPS mistreatment of ME and at last the PACE appologists and their establishment enablers are forced to step back from their irrational faith in unblinded trials relying on self reported measures.

It is heartening that the list of academics supporting such as this letter continues to grow.
 
Esther12 said:
I wonder what response there will be?
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If the previous form of other 'establishment' responses is anything to go by, they will select something that was not in the letter and respond to that or deliberately misunderstand a point in the letter and respond to that misrepresentation, but ignore all the main points. They may also add the claim that all these points have already been adequately dealt with elsewhere, so don't need to be answered again.

However the letter is very heartening and there might actually be an honest response. Journals and Universities can not go on ignoring clear and valid points for ever.
 
I also thought that this works as a useful summary of problems for those who do not need some of the scientific terminology explained to them. Tuller's previous blogs on this needed to be really long, partly because things needed to be explained in a way that a general audience could understand. The brevity of this letter might encourage more researchers to read it, and take an interest?
 
As a child I was an "adult pleaser" (probably not unusual). I would usually tell adults what they wanted to hear, rather than tell the truth, if there would be no immediate consequences to doing this. It was so much easier than disagreeing with them.

If I was a child enrolled in something like LP, and had adults telling me I must never say I had ME or CFS or must never say I was fatigued or tired, then when asked how I felt 6 or 12 months later by people involved in the same study, I would have done exactly what I always did when I was young. I would have taken the easy way out, and answered with what the adults wanted to hear.

In any study that involves teaching children they must lie to themselves and others, how can anyone involved in it ever know how they (the participants) truly feel? As far as I can see the results will always be nonsense.
 
Very clear and to the point. I also like that the demanded action is relatively mild and very reasonable. No one could rationally object to it:
The Archives paper must be corrected to acknowledge that the sample included the feasibility trial participants and that the review of their data informed the decision to switch the outcome measures. The paper should also present separate results for participants in the feasibility trial and those recruited afterwards. And the corrected version must clarify the status of the official school attendance records; if these data were collected, as the recent news account suggested, they should also be reported.
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Trish said:
This has cheered me up. Excellent letter.
I wonder whether copies should be sent to Bristol University and to the Ethics committee that approved the trial and the changes to the protocol.
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I do wonder if a complaint to the ethics committees would be a good idea. I think the Exeter ethic committee acted inappropriately in converting a feasibility study to a full trial (and doing so via a subcommittee of 2 people). I think the ethics committee should have bounced the changes and said its a new trial reapply. But then its not a new trial but it is being presented as one but under the same ethics approval as the feasibility study. Its all very dodgy.
 
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