PACE trial, "piece of crap" or "thing of beauty"? (Poll)

[anne_likes_red]

I wonder who the 2 votes for beauty were from. Anyone prepared to come out and admit to voting for beauty?

Flymon Wessely.
And I bet he figured out how to vote twice.

 

[moblet]

Can we vote both ways? Its a beautiful example of a pile of crap.

After all, a pile of crap is a thing.

This study will be an exemplar in courses on how to not do research.

We should seek some expert opinions by polling some scatologists. But not philosophical scatologists, they would accuse us of devising a moral dilemma.

 

[moblet]

If I may muddy the waters a little further:

In the Beginning was the Plan
And then came the Assumptions
And the Assumptions were without form
And The Plan was completely without substance
And the darkness was upon the face of the Workers
and they spoke among themselves, saying
"It is a crock of sh*t, and it stinketh."
And the Workers went unto their Supervisors and sayeth
"It is a pail of dung and none may abide by the odor thereof."
And the Supervisors went unto their Managers and sayeth unto them,
"It is a container of excrement and it is very strong,
Such that none may abide by it."
And the Managers went unto their Directors and sayeth,
"It is a vessel of fertilizer, and none may abide by its strength."
And the Directors spoke among themselves, saying one to another,
"It contains that which aids plant growth, and it is very strong."
And the Directors went unto the Vice Presidents and sayeth unto them,
"It promotes growth and is very powerful."
And the Vice Presidents went unto the President and sayeth unto him,
"This new plan will actively promote the growth and efficiency of
this Company, and these Areas in particular."
And the President looked upon The Plan,
And saw it was good, and The Plan became Policy.

 

[Laelia]

Yay! Me too! Silliness is sometimes the only way to go. Take Care.

Yay! Where would we be without sillyness?

Hopefully it won't be long before we're both able to engage much more in the "sensible" discussions. It's sad to think of all the brains and talent out there going to waste because of the devastating effects of this illness. When they start discovering some effective treatments (which they will), there is going to a huge 'awakening' of great minds amongst those previously very sick patients. The (already lively) ME community will grow exponentially and we will become a powerful force to be reckoned with! Now that's something to look forward to.

 

[Laelia]

A thing of beauty....now up to 3 votes!

What! Another vote for beauty? We're going to need to get some fly screens installed around the polling booth.

 

[Laelia]

Flymon Wessely.
And I bet he figured out how to vote twice.

Looks like we're gonna need a very large fly swatter for this one.

 

[Laelia]

Looks like we're gonna need a very large fly swatter for this one.

I just want to point out that this was a JOKE (in case it wasn't obvious)! I don't really want to see Flymon swatted!!

 

[moblet]

I just want to point out that this was a JOKE (in case it wasn't obvious)! I don't really want to see Flymon swatted!!

You're probably too late. It's almost certainly been parlayed into a death threat by now

 

[Countrygirl]

I just want to point out that this was a JOKE (in case it wasn't obvious)! I don't really want to see Flymon swatted!!

Far, far too late, @Laelia , the Science Media Centre has just re-tweeted Flymon's tweet that he would feel safer infiltrating an ISIS-held stronghold than continuing to lurk on Phoenix Rising.

 

[suseq]

Gosh, really hope my flash of lighthearted exuberance hasn't been misconstrued. Apologies if it has. Aim was to try and add a little happiness and joy, and moral support, as finding the 'Yay!' and the humour within each and every day of this relentless illness and the nonsense surrounding it is a blessing I think, and what helps me stay happy and positive, and hopefully others too.

 

[Countrygirl]

. Aim was to try and add a little happiness and joy, and moral support, as finding the 'Yay!' and the humour within each and every day of this relentless illness .

You did and continue to do so @suseq !

Thanks for the smile!

(The Science Media Centre is grateful too as by giving them something to get excited about you are keeping them from the job centre queue for one more day )

 

[suseq]

Thanks @Countrygirl. Thankfully the SMC seems to be doing an excellent job of losing itself all credibility. And that really deserves a Yay! as does this quote I've just found on the quote of the day thread:

As the writer Sophie Heawood said, “The older I get, the more I see how women are described as having gone mad, when what they’ve actually become is knowledgeable and powerful and fucking furious.”

And may I add from personal experience 'with an incorrigible sense of humour!'

(And so thrilled that I've finally managed to work out how to use mulitquote! Next challenge is to work out how to add pics/videos and emoji's [slowly working my way through the Wiki 'how to'] only to forget it all tomorrow/immediately!)

 

[Laelia]

You're probably too late. It's almost certainly been parlayed into a death threat by now

Oops! Sorry folks. Me bad

 

[Laelia]

Far, far too late, @Laelia , the Science Media Centre has just re-tweeted Flymon's tweet that he would feel safer infiltrating an ISIS-held stronghold than continuing to lurk on Phoenix Rising.

 

[moblet]

Gosh, really hope my flash of lighthearted exuberance hasn't been misconstrued.

Don't worry @suseq, you're fine. We're referencing an aspect of Wessely's behaviour that hasn't been mentioned in this particular thread (but you can see it here). One of his tactics for undermining sufferers was to claim that he had received death threats from them (i.e. clearly this shows that they are mentally unhinged); the claim was rolled out again as part of the effort to avoid scrutiny of the PACE trial data, at which point it was investigated and found to be false.

 

[Countrygirl]

https://theconversation.com/how-a-s...-was-doctored-adding-to-pain-and-stigma-74890
How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma

The public relies on scientists to report their findings accurately and completely, but that does not always happen. Too often, researchers announce only their most favorable outcomes, while keeping more disappointing results well out of sight.

This phenomenon, first identified by the psychologist Robert Rosenthal in 1979, is called the “file drawer problem.” Although it is widely recognized – affecting drug trials, psychology experiments and most other fields – it has seldom been documented, for obvious reasons. Suppressed results are, well, suppressed, and they are usually discovered only by chance.

It was therefore almost unprecedented when a group of patients, at the end of last year, successfully unmasked the skewed data behind an influential British study, first published in Lancet in 2011, of the devastating disease known as Chronic Fatigue Syndrome (sometimes called myalgic encephalomyelitis or ME/CFS).

My interest in this issue is both professional and personal. As a law professor, I have devoted much of my career to the study of judicial ethics, including the problem of implicit biases that can undermine the reliability of both court trials and clinical trials.

I have also been living with ME/CFS for over a decade, so I am acutely attuned to the need for responsible and transparent research on the illness. Unfortunately, the most extensive study of ME/CFS – called the PACE trial – was deeply flawed from its inception, in ways that the principal investigators have yet to acknowledge.

Thus, the PACE investigators proved nothing more than a familiar adage among statisticians: If you torture the data, they will confess anything.

Researchers in the U.S. and Australia have recently made great progress toward identifying biomarkers for ME/CFS, which may lead to an effective medical intervention. Over 100 prominent researchers, clinicians and organizations have called on Psychological Medicine to retract the PACE article, although the journal has not yet publicly responded.

Thanks to the original PACE announcement, however, graded exercise is still routinely prescribed throughout the U.S. and the U.K. despite reports that the treatments can cause intolerable pain and relapse. Those who question GET are often told that they must simply exercise more, no matter how badly they crash afterward.

It is bad enough to torture the data, but it is indefensible to torture patients based on manipulated results.