Analysis of the Scandalous PACE Trial

[ukmsmi4]

Excellent article analysing the so-called science of the PACE trial. A bit lengthy and a brain fogged patient can get bogged down in the stats. But the language is easy to follow and the comments are well worth reading. This was pasted on ME Support and ME/CFS Evolving Science facebook pages.

stats.org/pace-research-spa...

[readerlist]

Peter White writes a letter for WSJ claiming data release is not possible for patient privacy jcoynester.files.wordpress....

[ukmsmi4 in reply to readerlist]

Well that's just tosh isn't it.  I've seen several comments online from participants saying they have never even been asked, and as long as the data is anonymised they have no objection whatsoever to it being released.  Not seen a single comment (anonymous or otherwise) claiming to be a participant that objects.

Besides if they aren't capable of anonymising data then they aren't really qualified to be running research trials.

And as for there being more evidence supporting the use of these therapies than any other treatment - give me a break.  That's because there ARE NO OTHER treatments available to people to compare with yet.  What about the 5,000+ pieces of research out there that prove the condition is primarily a physical one which surely warrant more research not only into the physical cause of the condition but any resulting potential physical treatments. Conversely there is no evidence to prove it has anything more than secondary psychological aspects, much as any chronic illness does, so why the focus on psychological treatments.  And just because evidence of other treatments working is not there (even if that were true) that does not prove in any way whatsoever that CBT or GET do work.  Their so-called research certainly doesn't prove it either given that so many qualified scientists around the world can drive a coach and horses through it.

Pretty poor thing to admit whichever way you look at it.

[Len607 in reply to ukmsmi4]

Career and reputation damage forbetterscience.wordpress.... when science takes a closer look.

[ukmsmi4 in reply to Len607]

That's clearly the only reason they have for wanting to keep the data secret.

To put it in it's simplest terms, if they have nothing to hide, what are they worried about? 

[CheshireKatz]

Without original data access reports of harm ie how many dropped out from GET because of worsening symptoms.

Without independent data review safety of CBT and particularly GET  is not proven. When the original task was establishing the most effective treatments there is clear failure which has been stated by patient advocates for many years.

[ukmsmi4]

Have just seen Cort Johnson's response to the Goldin analysis on Health Rising

cortjohnson.org/forums/thre...

[readerlist in reply to ukmsmi4]

Amy Dockser Marcus writing in the Wall Street Journal was an article I had missed, until reading it my belief was the media were universally ignoring this story.

Consider the hooplah surrounding PACE publishing in 2011 along with mediation papers suggesting exercise avoidance, questions for media outlets involvement in supporting this spectacularly bad research.

[Effort]

Using anonymized data from PACE sister trial FINE as a guide until PACE  data made available ncbi.nlm.nih.gov/pubmed/233...