PACE Trial and PACE Trial Protocol

[Graham]

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.

 

[Valentijn]

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.

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

PS - Page 100 of this thread!

 

[Simon]

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.

A brilliantly clear and powerful explanation, and I loved "the tiny pink cone of difference". Great work, congratulations to Ian too.

 

[Bob]

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

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?

 

[Bob]

Here's Graham's series of videos, for anyone who hasn't seen them all:

1. www.youtube.com/watch?v=Sa3LyYxu49s
2. www.youtube.com/watch?v=PJf27ExfyMA
3. www.youtube.com/watch?v=qXMZv0MzFCo

 

[Esther12]

A great way to celebrate 100 pages!

 

[Dolphin]

Party!!
Everyone on the dance floor:
:thumbdown:

 

[Graham]

As Grey Ham I'm surely matured
Encrusted in brine, that's assured
But now CBT
Has converted me
To something that truly is cured


I can't twitch to music, so here's my contribution to the celebrations. I would have offered some of my home-brewed wine, but even Simon turned it down.

 

[Bob]

A great way to celebrate 100 pages!

Party!!
Everyone on the dance floor:
:thumbdown:

lol@Dolphin

I think we should save the 2000th post for Graham's 4th video, if he completes it soon!

 

[Sean]

"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.

 

[Valentijn]

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.

So, it's now 35 days from September 26th ... any sign of this info being released?

 

[Mark]

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.

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...

Big up to the forum member who achieved this. 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?...

 

[user9876]

So, it's now 35 days from September 26th ... any sign of this info being released?

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

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.

 

[Bob]

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.

Thanks user. Here's a link to what you've quoted:
http://www.ico.gov.uk/tools_and_resources/decision_notices/decision_notice_list.aspx?m=9&y=2012

 

[Valentijn]

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.

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]

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 .

(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.)

 

[Bob]

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)?

Hi Valentijn, I don't think anyone knows anything more than what's been posted by user9876.
If I find out any further info, I'll post it.

 

[Bob]

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

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

See attachment for full details.

 

[Bob]

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

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.
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

This score is better than the mean scores after treatment with CBT and GET.
This score falls within the 'normal range'.

 

[Graham]

The fourth and final video in the set is ready:

Hope it is up to standard

Now, what are the chances of Phoenix Rising publishing a link to them on its front page?