Racianello: PACE obfuscation will continue “until we are all dead”

Share on facebook
Share on twitter
Share on email

Professor Vincent Racianello of Columbia University has said of the PACE trial controversy, “I think they are going to ignore, obfuscate, and give their usual responses until we are all dead. I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry.”
Racianello’s comment appeared in a blog post by ME/CFS advocate Jennie Spotila which provided updates on a number of current attempts to bring PACE to book.
Microbiologist Racianello, host of Virology Blog, was among several scientists who requested raw data from the PACE trial under the Freedom of Information Act and were refused by Queen Mary University of London (QMUL). The team includes public health scientist Dr. David Tuller of the University of California, Berkeley, geneticist Dr Ron Davis of Stanford University and biostatistician Dr Bruce Levin of Columbia.
Tuller told Spotila that they appealed against QMUL’s decision but QMUL declined to undertake a review. The group then filed an appeal with the Information Commissioner’s Office, but expect that the decision will take many months.
Racianello, Davis and Levin were among six scientists who wrote an open letter to The Lancet — who published the PACE trial — in November 2015 criticising the study and requesting an independent re-analysis. The letter was ignored and resubmitted in February, this time with signatures from a total of 42 scientists and specialist clinicians.
Racianello told Spotila that The Lancet’s editor, Dr. Richard Horton “invited us to submit it as an ‘official’ letter to Lancet, which would be published; and we did that. No response from him or Lancet yet.” Spotila asked Dr. Horton when the letter would be published but he did not respond.
Professor James Coyne of Pennsylvania University also requested raw data from PACE, but under the data-sharing policies of the science journal PLoS One, in which some of PACE’s results were published. The study authors refused to supply the data and, six months after his request, he told Spotila, “I am leaving things in PLoS’s hands. I am considering a range of responses if the journal does not produce the data or retract the paper.”
Commenting to Spotila on the state of the controversy about PACE, Tuller said, “I have to believe that the scientific community will gradually demand that it get retracted or the pressure to release the data will be so overwhelming that QMUL will finally decide that its institutional interests diverge from those of the authors.”
Racaniello told Spotila, “I don’t have hope that the PACE authors, or Lancet, will respond in any meaningful way until there is more of an outcry” and recommended that patients “share David Tuller’s articles on what is wrong with the study. If these are too complex, use his bullet point summaries. The patient community has been active but we need more scientists and physicians to weigh in on the problem.”
Spotila concluded that “All scientists who care about strong peer review, open data, and verification of results should care about PACE, even if they don’t give a hoot about ME/CFS… we should do everything we can to communicate about the PACE issues to scientists outside the ME/CFS community. They can help boost the signal enough to get the Lancet, PLoS, PACE authors and universities to pay attention and take the necessary actions to bring PACE-Gate to the correct conclusion.”

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

#MEAction activists outside Scottish Parliament

Scottish Election! Ask your MSPs to support people with ME

If you live in Scotland, please join our campaign to ask your MSPs to pledge their support for people with ME. Email your MSPs The Holyrood elections are coming up on 6 May 2021 and we want to make sure that MSPs are aware of ME and the desperate need for support. There are more

Read More »
Terri Wilder - #MEAction Activist Camp

#MEAction’s ACTIVIST CAMP! – the Highlights!

It’s a wrap! Last weekend concluded the final session #MEAction’s first ever ACTIVIST CAMP!, a teach-in series for activists in the United States. We are so proud of this program and what it has accomplished. Congrats to our new grads!  #MEAction ACTIVIST CAMP! aimed to deepen our campers’ engagement with activism – teaching our collective

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top