Information Commissioner's Office orders release of PACE trial data

[Dolphin]

It must be so embarrassing for you that somebody knows your Chalder Fatigue questionnaire score.

Correction:
It must be so embarrassing for you that somebody knows your Chalder Fatigue questionnaire score whenever you entered the PACE Trial (some time between March 18, 2005 and Nov 28, 2008) and then again your second set of such scores,
taken sometime between May 8, 2008, and April 26, 2011.

 

[leela]

I dont know much about law, but if you look at the 1st tribunal decisions, alot of the appeals are dismissed.

http://www.informationtribunal.gov.uk/Public/search.aspx?Page=1

I think bcause the ICO rules in favour of releasing the data, i think they may struggle overturning thedecision. .... I think

I suspect the tactic here is Delay Delay Delay so there is time to Redact Redact Redact.

 

[alex3619]

This is what I wrote on Facebook before finding this thread:

Wow. But who is this mystery person ... a representative of which organization? Solo scientist? If this data is subjected to close analysis I think it will be damning. They can still appeal. They might have "lost" the data.

We do not know who will get the data though. It could even be a smokescreen. I tend to doubt that last point, but I cannot rule it out.

I think the entirety of the PACE trial needs close review by a panel of experts, all outside the UK, and including statisticians and experts on study design.

I think that White being a coauthor of a paper that explores the failure of statistical methods used in PACE, methods that can be shown to severely distort outcomes in favour of their hypothesis, is unscientific conduct. It needs to be investigated, again by independent investigators.

 

[alex3619]

Chances are they will appeal, but do you think their appeal will be successful?? What would be the time scales for this?

I think it said 28 days for appeal, but there will be extra time for the appeal to be considered and published, and then more time for the data to be anonymized and released.

Let me point out that once the data is anonymized then others, especially bona fide researchers, cannot easily be held off if they ask for the data. This could pave the way for independent reviews.

 

[SOC]

No, I am Annie Gsampel.

We are Anonymous.

#JeSuisAnnieGsampel

This will trend on Twitter before morning.

Yep, we need some kind of advocacy event around this. T-shirts, banners on our websites, and.... all those other places whose names I cannot remember because I'm in a PEM flare and my word-finding has gone kaflooey. Do we need a face for "Annie" like Anonymous has, or is "I am Annie Gsampel" enough?

 

[alex3619]

The whole fabric of medicine is to blame for this CFS as ME disaster, not just the PACE study, although PACE is a key enabler of allowing doctors to ignore the patients suffering as genuine disease based ailments.

Yes, this shows a huge and dangerous hole in the fabric of how psychiatric research and medical research review operates globally. Blatant errors get ignored for years, one now arguably not in error but deliberate, and it takes years of patients trying to get anyone to notice and then they do.

In the end it will be the experts, including the international scientific community, who decide. However none of that would have been possible without many of us, and a few lone voices in science and media, who did their bit.

Tuller, Coyne, Laws, these people are writing a new chapter in ME history.

 

[SOC]

The next new PR username of Annie Gsampel is up for grabs - and I think that the person who proposed it should sign up for it right away or risk having it snagged away like a bride's bouquet being flung to a crowd of spinsters. Or perhaps nominate someone who should have the honor of that username, if you don't want it.

Imagine the number of likes you'll get with that username - a few gazillion.

Hah! Check out my title. <----- Now I am Annie Gsampel.

 

[worldbackwards]

Now I am Annie Gsampel.

I knew it was you.

 

[alex3619]

Hey, how'd you find me out?!?

Hidden cryptic meaning in the numbers! If you translate my first sentence here you can find the true meaning of the universe. Secrets are everywhere, and only the illuminati unnamed group knows.

[satire]

 

[alex3619]

Yep, we need some kind of advocacy event around this. T-shirts, banners on our websites, and.... all those other places whose names I cannot remember because I'm in a PEM flare and my word-finding has gone kaflooey. Do we need a face for "Annie" like Anonymous has, or is "I am Annie Gsampel" enough?

A blank outline of a head? What colour? Blue?

 

[SOC]

A blank outline of a head? What colour? Blue?

Oooh, I like that. It sorta fits with the whole invisible faceless person thing that ME does to us. (That doesn't express what I'm thinking very well, but hopefully you get the idea. Maybe someone currently more verbal can expand on the idea.)

 

[Kati]

Queen Mary University of London sound positively deranged in how they've approached this. Just extraordinary.

The possibility that they will appeal as a tactic to delay release of data is huge.
I would also worry about them destroying the data.

 

[Kyla]

lol. Love this


Backstory:
Annie is part of a "militant" science brigade - seeking to free innocent data from those who would torture it

 

[alex3619]

Oooh, I like that. It sorta fits with the whole invisible faceless person thing that ME does to us. (That doesn't express what I'm thinking very well, but hopefully you get the idea. Maybe someone currently more verbal can expand on the idea.)

That is what I had in mind.

 

[Kati]

No, I am Annie Gsampel.

I AM Annie Gsampel.

 

[jimells]

In the UK, "militant" has overtones of "the militant wing of the IRA" - that is, the ones who used to blow people up, as opposed to their "political" wing.

A google search shows "militant" as meaning "confrontational" or "violent". There's obviously a big difference. I prefer to avoid the word "militant" for obvious reasons, given what PWME have been accused of. If people want to be verbally confrontational (as opposed to abusive) then I think that can be appropriate - but never violent.

I understand your concerns. The situation in the U.S. is similar. Perhaps folks recall the infamous "McCarthy Era" of the 1950's when one's liberty and livelihood were jeopardized by any accusation of being a "Commie". These tactics were used to intimidate troublemakers, whether Communists or not, into silence. The Hollywood blacklist, which destroyed many careers, is probably the best-known use of this.

Less well-known is the Taft-Hartley Act of 1947. One of its provisions (found unconstitutional 20 years later) required labor union leaders to sign an affidavit that they were not supporters of the Communist Party. This had a major impact on the IWW (my former union), as many of its leaders refused to sign such odious documents.

The U.S, government doesn't care about "Commies" anymore. Now it's "self-radicalized" "material supporters of Terrorism", which can be anything at all, or absolutely nothing. Sending money to one's family in Somalia can be enough to end up in prison.

My point is that Our Dear Leaders will never hesitate to use any tools necessary to crush dissent, whenever that dissent challenges their power. It doesn't matter what dissenters do or don't do - our very existence is enough to make them apoplectic.

Eventually they always overplay their hand and end up discrediting themselves in a very public way, just as Sir Simon and pals are doing now. The more they foam at the mouth, the sooner it will be over, and we can get down to the business of real research and treatments.

 

[catly]

#JeSuisAnnieGsampel

This will trend on Twitter before morning.

Just tweeted, plz retweet & favorite

 

[Large Donner]

In the UK, "militant" has overtones of "the militant wing of the IRA" - that is, the ones who used to blow people up, as opposed to their "political" wing.

A google search shows "militant" as meaning "confrontational" or "violent". There's obviously a big difference. I prefer to avoid the word "militant" for obvious reasons, given what PWME have been accused of. If people want to be verbally confrontational (as opposed to abusive) then I think that can be appropriate - but never violent.

Its ok I just contacted the Daily Telegraph and they said .......

As non-medical specialists, readers tend to apply the term 'militant' more loosely, with a meaning approximate to the Wikipedia definition......."one who is a pacifist and in the pursuit of Zen balance via such actions as yoga meditation and staring hypnotically at the tv for no obvious benefit".

So its all cool and the gang.

 

[CFS_for_19_years]

Yep, we need some kind of advocacy event around this. T-shirts, banners on our websites, and.... all those other places whose names I cannot remember because I'm in a PEM flare and my word-finding has gone kaflooey. Do we need a face for "Annie" like Anonymous has, or is "I am Annie Gsampel" enough?

Oooh, I like that. It sorta fits with the whole invisible faceless person thing that ME does to us. (That doesn't express what I'm thinking very well, but hopefully you get the idea. Maybe someone currently more verbal can expand on the idea.)

This is the face of the accuser in the 1991 rape trial of Kennedy family scion William Kennedy Smith - this could work with the colors and labels changed:

 

[jimells]

Hidden cryptic meaning in the numbers! If you translate my first sentence here you can find the true meaning of the universe. Secrets are everywhere, and only the illuminati unnamed group knows.

I tried reading your words back to front but came up empty. But I know there's a secret message in there someplace.