Yes, I didn't even notice "pulled out on FUNDING" language here. @osisposis I believe you're thinking of the recent Canadian kerfuffle.
-J
ok, sorry, to much to keep up with
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Yes, I didn't even notice "pulled out on FUNDING" language here. @osisposis I believe you're thinking of the recent Canadian kerfuffle.
-J
ok, sorry, to much to keep up with
I doubt that they've given up, however. I think they can feel pretty confident that the Lancet will support them no matter how poor their data, so they can continue other, very similar trials with impunity. Even if PACE were totally discredited (er.... moreso), imply that it was only this one trial, not the thinking behind their actions that is to blame.
I think we need to amp up our demands that the disease described by CCC, the ME-ICC and the IOM has nothing whatsoever to do with this disease theory and these patient cohorts.
What about all the papers referring to PACE, what about the PACE follow up papers including the one in PLOS One which allowed authors to not give out the data for? These should be retracted.I wonder about the ramifications for the Cochrane Reviews. Medicine is still going to refer heavily to them, and they certainly carry more weight than the IOM report. It would be terrific if they were inclined to shift gears in how they choose their approach to analysis, but how likely is it to happen, with or without PACE, and how soon? PACE could still linger for some time even after many consider it discredited, given Lancet's history, after all.
What about all the papers referring to PACE, what about the PACE follow up papers including the one in PLOS One which allowed authors to not give out the data for? These should be retracted.
I think until they are clearly sacked, disgraced or thrown under a bus they are likely to keep spouting self-justificatory bollocks at every opportunity.Also - how certain can we be that these authors will now completely STOP publishing based on PACE data?
I don't personally believe there is any legal risk whatsoever to releasing the data into the public domain now, but that is a matter for Alem to decide. It's normal practice for the data to be released publicly, I think, but I don't think there's any obligation on Alem to release it. The only strategic consideration I can think of is that it might be wise for anybody considering publishing research analysing this data to publish their protocol before the data is released. Otherwise they are open to the allegation that they decided on their protocol after they had seen the data. That applies also to non-academic analyses of the data, i.e. any analyses that the patient community might wish to undertake.They've had a month to strategise and consult legal experts (of the kind who likely don't mind playing dirty).
I think the ME community need to also take a breath after celebrating and think about how to proceed moving forward with the release of data. I know that the info is in the hands of Alem Matthees who I understand is not well.
Perhaps some legal advice of our own would be good.
I would not put it past the QMUL group to have some strategy in play pending what we do next.
FWIW, I think the more all people know and have the facts the better our situation is. We need to ensure that PDW does not try to hijack the narrative again.
I would like to thank my learned friend for urging caution. For the avoidance of doubt that was a metaphor for being disowned by QMUL. Furthermore, I would like to make it clear that I don't have a bus drivers licence.Careful @TiredSam you know how they like to twist what we say on PR
@JaimeS, in this blog you quote @Tom Kindlon as saying
But Alem's request did not include data for the objective measures, so I'm not sure how this will be possible. What did you have in mind Tom?Looking at how the objective data relate to the subjective outcomes will also be very interesting.
That's my concern - they will just point to all the other trials and say that even if PACE is discredited, their theory and treatment approach are still valid, at least for some subset of "CFS" patients
I think until they are clearly sacked, disgraced or thrown under a bus they are likely to keep spouting self-justificatory bollocks at every opportunity.
Also - how certain can we be that these authors will now completely STOP publishing based on PACE data?
.... It doesn't end here. It's not over.
Retraction Watch
Tracking retractions as a window into the scientific process
Posts you may have missed: Student loses PhD, controversial data to be released
We’ve got some late-breaking news to report — plus, it’s been a busy news week overall, and some of our email alerts didn’t go out, due to a programming glitch. Below, here are some recent stories you may have missed.
A tribunal at Queen Mary University of London has decided to disclose the data from the controversial PACE trial, which tested various therapies for chronic fatigue syndrome. For critics of this study, this has been a long-awaited decision.
The statement which we should have issued
We sincerely apologize for not releasing the data earlier. We now realise this was a big mistake; even more so as the trial was funded with more than 5 million pounds of public money and therefore the public has a right to see the raw data.
We also sincerely regret ignoring our own NULL effect and making it make it look as if our two favorite treatments ie CBT and GET are moderately effective; it was a major oversight on our side to suggest that 22% of people recovered courtesy of CBT and GET;
We now realise that we have been exposing people with this disease for at least 25 years to ineffective and harmful treatments and that hundreds of thousands of patients have been severely harmed by especially GET;
We also regret decades of ridiculing patients with a debilitating neuro immune disease and pretending it to be a functional disorder, MUS, PPS or words to that effect