PACE Trial and PACE Trial Protocol

Graham

Graham

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Sussex, UK
Dragging the discussion away from the detailed and technical to the frivolous and quirky - the third video is now available. I am not going to make much of an effort to publicise this one yet. The fourth and last one should be ready relatively soon, so I will wait until then.
 
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Valentijn

Senior Member
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15,786
Graham said:
Dragging the discussion away from the detailed and technical to the frivolous and quirky - the third video is now available. I am not going to make much of an effort to publicise this one yet. The fourth and last one should be ready relatively soon, so I will wait until then.
Click to expand...

OMG ... I think the CBT snippet from your video cured me! I will forever more check the appropriate boxes on questionnaires :rofl:

PS - Page 100 of this thread!
 
Simon

Simon

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Monmouth, UK
Graham said:
Dragging the discussion away from the detailed and technical to the frivolous and quirky - the third video is now available. I am not going to make much of an effort to publicise this one yet. The fourth and last one should be ready relatively soon, so I will wait until then.
Click to expand...
A brilliantly clear and powerful explanation, and I loved "the tiny pink cone of difference". Great work, congratulations to Ian too.
 
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Bob

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Location
England (south coast)
Valentijn said:
OMG ... I think the CBT snippet from your video cured me!
I will forever more check the appropriate boxes on questionnaires :rofl:
Click to expand...

lol, yes, I'm cured too!

It was the man pointing at me, saying "you're not as ill as you think you are", that did it for me!
How could I argue with such hypnotic authority!
I assume he's a (brilliant) psychiatrist?

Great work, Graham! I think it's your best video yet.
(And the other two were brilliant, so it's really saying something.)

Are you going to post it on your thread with the other videos?
 
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Sean

Senior Member
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7,378
"the tiny pink cone of difference"

Snigger, snigger,....

Reminds me of an Australian politician who described an opponent as "all tip and no iceberg".

More nice work, Graham. Thanks.
 
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Valentijn

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Mark

Mark

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5,238
Location
Sofa, UK
user9876 said:
I just came across this ruling from the information commissioner about the disclosure of deteriation data.

http://www.ico.gov.uk/~/media/documents/decisionnotices/2012/fs_50451416.ashx

The ruling seems to be that it is in the public interest to disclose the data and Queen Mary's have 35 calender days from the 26th of september to comply.
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Whoops of delight!!!

Only just checked this thread for the first time in a week or two, to find out I've missed the party as usual. But...I'm dancing now, in my mind at least...:D

Big up to the forum member who achieved this. :thumbsup: Let's have some more FOI requests please, informed by the same factors that achieved success here - I'm sure there's lots more data which would be...interesting...to have on public view, and indeed the entire dataset should be released in a timely fashion according the MRC guidelines, so there's plenty of potential here. I always thought that FOI requests are our best weapon and we need to play that card much more strongly in all areas, so I look forward to seeing the secrets that disclosure may reveal.

Now...would we prefer that Queen Mary's now comply with the decision, or would we prefer that they fail to do so and face legal sanctions followed by forced disclosure?...
 
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user9876

Senior Member
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4,556
Valentijn said:
So, it's now 35 days from September 26th ... any sign of this info being released?
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I've no idea who put the request in or what they have been told. So I just looked at the information commissioners web site which says its gone to an appeal.

Case Ref: FS50451416
Date: 26/09/2012
Public Authority: Queen Mary University of London
Summary: The complainant has requested information relating to a trial carried out for the treatment of chronic fatigue syndrome and subsequent deterioration rates. The request was refused under section 22 of the FOIA (information intended for future publication). The Commissioner’s decision is that although section 22 is engaged the public interest favours disclosure of the information. The Commissioner requires the public authority to provide the requested information to the complainant. This decision notice is currently under appeal to the Information Tribunal.
Section of Act/EIR & Finding: FOI 22 - Complaint Upheld
View PDF of Decision Notice FS50451416
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I could read this as a desparation to cover up their results but I wonder if it is just that they don't believe the public have a right to know anything but their spun version of the results. Other things the psychiartits say suggests they hate the idea of public scrutiny of their work.
 
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Valentijn

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15,786
user9876 said:
I've no idea who put the request in or what they have been told. So I just looked at the information commissioners web site which says its gone to an appeal.
Click to expand...

Any idea how long the appeals process takes? Or where we can see that info (maybe it's mentioned earlier in the thread and I missed it)?
 
Shell

Shell

Senior Member
Messages
477
Location
England
Graham As I am a foggy brained twit these days I really appreciate the videos which are clear enough even for me.
Looking forward to no. 4. Hope they aren't too draining to make though. There's a lot of concentration!

I find the fact that an FOI on deterioration rates is needed at all says everything :devil:.

(I did GET without support. It's cheap because no one helps you - they just tell you what to do. I did it and went from being able to walk around the block on crutches to being unable to walk a few paces from my home.)
 
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Bob

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England (south coast)
SF-36 Physical and Mental Health Summary Scales: A User’s Manual.
Ware JE, Kosinski M, Keller SK.
The Health Institute, Boston, MA.
Dec 1994
http://books.google.co.uk/books/abo...alth_Summary.html?id=L5EuNgAACAAJ&redir_esc=y

SF-36 Physical and Mental Health Summary Scales: A User’s Manual said:
Appendix B: Tables of Results
Table B.1

Adjusted mean scores for SF-36 scales and component summaries for four chronic conditions

SF-36 Physical Function:

Congestive heart failure 59.47

Myocardial Infarction, Recent 72.40

Type II diabetes 74.36


Note: Mean scores were estimated from linear regression models that controlled for demographics and MOS design variables
Click to expand...

See attachment for full details.
 

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Bob

Senior Member
Messages
16,455
Location
England (south coast)
SF-36 Physical and Mental Health Summary Scales: A User’s Manual said:
SF-36 Physical and Mental Health Summary Scales: A User’s Manual.
Ware JE, Kosinski M, Keller SK.
The Health Institute, Boston, MA.
Dec 1994
Appendix B: Tables of Results
Table B.1
Adjusted mean scores for SF-36 scales and component summaries for four chronic conditions

SF-36 Physical Function:
Congestive heart failure 59.47
Click to expand...
This score is better than the mean scores after treatment with CBT and GET.

SF-36 Physical and Mental Health Summary Scales: A User’s Manual said:
SF-36 Physical and Mental Health Summary Scales: A User’s Manual.
Ware JE, Kosinski M, Keller SK.
The Health Institute, Boston, MA.
Dec 1994
Appendix B: Tables of Results
Table B.1
Adjusted mean scores for SF-36 scales and component summaries for four chronic conditions

SF-36 Physical Function:
Myocardial Infarction, Recent 72.40
Click to expand...
This score is better than the mean scores after treatment with CBT and GET.
This score falls within the 'normal range'.
 
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