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"Another request for data from the PACE trial" 36 more scientists join request for PACE data

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/

On November 13th, five colleagues and I released an open letter to The Lancet and editor Richard Horton about the PACE trial, which the journal published in 2011. The study’s reported findings–that cognitive behavior therapy and graded exercise therapy are effective treatments for chronic fatigue syndrome–have had enormous influence on clinical guidelines for the illness. Last October, Virology Blog published David Tuller’s investigative report on the PACE study’s indefensible methodological lapses. Citing these problems, we noted in the letter that “such flaws have no place in published research” and urged Dr. Horton to commission a fully independent review.

Although Dr. Horton’s office e-mailed that he would respond to our letter when he returned from “traveling,” it has now been almost three months. Dr. Horton has remained silent on the issue. Today, therefore, we are reposting the open letter and resending it to The Lancet and Dr. Horton, with the names of three dozen more leading scientists and clinicians, most of them well-known experts in the ME/CFS field.

We still hope and expect that Dr. Horton will address–rather than continue to ignore–these critical concerns about the PACE study.
 
Messages
1,055
PACE is falling.
My bet is they retract the paper and say they were forced to do it because they couldn't release the data without breaking trial patient confidentiality. They'll get to climb down and save some face.
The AfME statement last night is giving them a get out of jail free card which is a shame.
It'll be interesting to see what happens in UK NHS ME clinic provision while the NICE guidelines are quibbled over after PACE falls.
 

John Mac

Senior Member
Messages
321
Location
Liverpool UK
"Action for M.E. has been asked to clarify its position on the PACE Trial and the release of data. As a charity, it’s very important that we consider the wide range of views shared with us and use these to inform our work. We have received requests to write to QMUL and support the release of data. We have also received requests from people who were involved in the Trial as participants to support t...hem to ensure that their data should not be released, anonymised or otherwise, as this is a breach of their consent. As the scientific debate about the PACE trial moves forward, we continue to listen to our supporting members, carers and advocates that contact us to share their concerns and feedback as well as the discussion that continues on social media. We take our role and position very seriously and for this reason the Trustees will carefully consider the issues and our position at the forthcoming Board meeting and action will be taken following this."

What a cop out