The PACE trial research group at Queen Mary University London (QMUL) have indicated that they would welcome the views of people with ME/CFS on their refusal to release anonymised data from the PACE trial .
They say: “We are currently seeking further ethical and scientific advice, as well as the advice of patients, on how best to provide independent decisions about appropriate access to relevant data in a way that balances the rights of trial participants, and future progress of the trial analysis and follow up, with the public interest in releasing trial data.”
This month's MEA website poll gives people the opportunity to express their opinion.
MEA website question:
Should or should not the anonymised data from the PACE trial be released for independent analysis?
VOTES SO FAR at 10.30am March 17
Should be released (99%, 1378 Votes)
Should not be released (0%, 5 Votes)
Not sure (0%, 6 Votes)
No opinion (0%, 2 Votes)
Total Voters so far = 1391
As there is considerable international interest in this issue, overseas votes are welcome.
Click HERE to find the poll and then scroll down the page a bit.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
MEA letter to QMUL supporting release of the PACE trial data
Hello. I might be being very dumb here, but where do we vote?
thanks
No you’re not. But I am!
Please click on https://meassociation.org.uk and then scroll down the page a bit.
I have certainly voted for the data to be released, but I hope that the independent analysis will be truly independent. The eminent signatories to the updated open letter to the Lancet would be trustworthy.
http://www.virology.ws/2016/02/10/open-letter-lancet-again/
Please vote for the release of the anonymised data for the PACE Trial. We have the opportunity for an independent analysis, as this is the only way we can back up our ME Scientific Experts from around the world and Dr Shepherd, MEA and all the charities calling for it’s release.
Millions of ME/CFS sufferers around the world are looking for the truth and recognition of the Neurological Disease that ME/CFS is.
Please help
I voted it should be released . Lets hope/ pray for independent analysis.
Hey,
Is it my imagination or is the matter of the release of anonymised data going to go before a court in April?