• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Today PLOS ONE requests release of PACE data


Senior Member

Update 7.03.2016. As James Coyne informed me, PLOS One has issued an editorial note demanding that the PACE trial authors release anonymised patient data. Excerpt:

“We have now carefully assessed the study and sought advice from two editorial board members, who have provided guidance on the data necessary to replicate the cost-effectiveness analyses reported in the article, and thus we have established which data we would expect the authors to share in the context of the analyses presented in this PLOS ONEarticle. We have contacted the authors to request the release of the data, which include individual patient-level data underlying tables in the article”.


Senior Member
It seems that pretty much everyone agrees that the data should be shared.

Hopefully the judges will also see it this way.

Will we see a first PACE author leave the sinking ship? There has got to be some point where someone, with less personal investment into this than the others, makes a calculation and decides it's better to quit before it's too late.


Senior Member
So the question now is what powers do PLOS have to enforce this ? Presumably the PACE authors will not comply without fighting it with everything they have got, it wouldn't even surprise me if they'd rather have the paper retracted than release the data.


Rebel without a biscuit
At least retracting the paper would have a more immediate effect.
Something about the NICE guidelines for ME not being reevaluated while PACE is seen as solid evidence and MEA trying to get the moratorium lifted.
Sorry someone else will have to clarify having trouble finding words today.


Senior Member
Which would be a de facto admission that they have something to hide, and their reputations would take a battering.

They have painted themselves into a corner on this issue, and deserve everything that is coming.

I suspect they'll try and drag things out until the after the Information Tribunal case has been heard next month. If they win the case they'll trumpet the importance of patient confidentiality, and try to use this as cover to justify their withdrawal of the PLOS paper. If they lose the data will be made public anyway, so there'd be no point in them continuing to refuse the PLOS request.