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, 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.
Ha! Couldn't help but having a good chuckle at this quote! A short quote but to the point! Perhaps sums up his huge output?Dr. David Tuller, University of California, Berkeley: "This study is a piece of crap."[56]
It's worth noting the MRC and sense about science (who run materials) were involved in this meeting. So it really is all trials but pace.I haven't read the whole article but I zipped down to the bottom to see how long it was and right at the bottom there is a scan of a document from the SMC - bit hard to read but blimey - a major meeting on the so called 'harassment'. Makes them look a bit . . . what can I say . . . strange? What were they doing? I don't want to be rude but it seems a bit like mass hysteria to me
Interesting that Sense About Science USA (Trevor Butterworth) are so good in supporting patients over this PACE stuff.
Good Lord. I hadn't really taken that in.It's worth noting the MRC and sense about science (who run materials) were involved in this meeting. So it really is all trials but pace.
Troubled by the way results from the PACE trial were released, patient organisations made a joint Freedom of Information request for the results of those outcome measures laid out in the trial's protocol but not published in the trial's initial paper.[3,50,51]
The response to this stated that the results for the protocol's recovery criteria were exempt from the Freedom of Information Act as they would soon be published in an academic journal.[52] This turned out not to be true. When these results had not been published over a year later, a new FOI request was made, which QMUL refused by stating that the PACE team had not calculated the requested results and therefore "the requested data relating to the recovery rates and positive outcomes do not exist."[53] A follow-up request that the trial's pre-specified outcomes be calculated from the trial data was then denied with the justification that the cost of conducting the calculations would be more than the £450 appropriate limit laid out by the Freedom of Information Act as “there is no longer a statistician employed by the PACE trial, [so] one would need to be recruited for this operation and trained.”[54] Mr Matthees began his FOI request by explaining that he was requesting anonymised data "in order to help ease the burden of staff having to perform the required calculations themselves" after previous requests for results were turned down.[55] It is surprising that a university does not already employ a statistician able to perform the requested analyses, and disappointing that QMUL then chose to spend over £200,000 fighting against the release of anonymised data that would allow for the independent calculation of the trials pre-specified primary and recovery outcomes.
Only someone who has so thoroughly refuted the study is allowed such remarksHa! Couldn't help but having a good chuckle at this quote! A short quote but to the point! Perhaps sums up his huge output?
I love watching PACE and QMUL get skewered by their own words.
Wonder who is currently a part of QMUL's committee, and if we could inform them of what's going on? That info is probably public somewhere. If they need to sign off on decisions like this, and are currently only getting spin from White, a dose of reality could change things pretty quick.
It's the 'USA' that's key.
"He has served as a member of the Gene Therapy Advisory Committee of the Department of Health, the Ethics of Research and Public Involvement Committee of the Medical Research Council and various other public and charitable bodies."
I wonder why just that one name was redacted from that agenda at the end? Curious!