Livestream Tuller and Hughes 2 Oct 2018 Newry : The PACE Trial: 'One Of The Greatest Scandals

[Brian Hughes]

I really enjoyed Brian's talk, well done @Brian Hughes. I recognised a lot of the ideas from the book.

Thank you, Trish! I am very glad that you (and others) were pleased and that so many others also had a positive reaction. It was an honour to be there really, and for me it is important to see everyone's reaction as it helps me gauge what I do.

 

[Brian Hughes]

Oh that link worked better

Enjoyed Brian’s talk

Thank you!

 

[Brian Hughes]

Good talk by Brian. Thanks @Brian Hughes

You're very welcome

 

[Brian Hughes]

Thank you, @dave30th and @Brian Hughes!

You're welcome!

 

[Brian Hughes]

Over 6 000 views by now. It's quite astonishing.

It really is. It's a great reflection on the solidarity of the community which I have found so, so impressive. And of magnificent organisation by @JoanNI

 

[Brian Hughes]

The event will be included in the monthly news-update of the German Association for ME/CFS.

That's excellent to hear. Thank you so much

 

[Barry]

I did like Brian's droll little ad lib of "Oh dear, I'm about to disappear out of the internet" (sorry, I forget precise phrasing).

 

[Wonko]

"......off the internet" I thought - but I could be wrong

 

[Barry]

"......off the internet" I thought - but I could be wrong

I watched last night, and my memory is a bit like an egg timer ...

 

[Wonko]

I watched last night, and my memory is a bit like an egg timer ...

I watched it last night, but for some reason my normally rock solid net connection, that was fine with other sites at the same time, kept dropping the stream, and the tail end of that comment was one of the places it resumed.

So...I may be wrong, my generally single threaded consciousness was also doing something else at the same time - I only noted it because I had to stop and try and figure out what @Brian Hughes was on about (that he was about to step out of shot of the camera being used to film the stream).

 

[Graham]

Listening to David's part made me wonder - has anyone seen the newsletter that the PACE team sent out? Is there a copy anywhere?

 

[Sasha]

Listening to David's part made me wonder - has anyone seen the newsletter that the PACE team sent out? Is there a copy anywhere?

There used to be copies of all the newsletters sent throughout the trial online, posted by the investigators. They seem to have moved, though - the links to the newsletters from this ME-pedia page on PACE are dead.

 

[rvallee]

Listening to David's part made me wonder - has anyone seen the newsletter that the PACE team sent out? Is there a copy anywhere?

I don't remember where I got it from but here is one issue:




The part I found most damning is the 10 Downing street quote. How in the hell does it make sense for the office of the PM to laud the success of a treatment during a trial for that treatment? There is such a huge suspension of disbelief about it all. It doesn't even come close to being normal.

 

[chrisb]

Not another dodgy dossier.

 

[large donner]

I don't remember where I got it from but here is one issue:


View attachment 4292

The part I found most damning is the 10 Downing street quote. How in the hell does it make sense for the office of the PM to laud the success of a treatment during a trial for that treatment? There is such a huge suspension of disbelief about it all. It doesn't even come close to being normal.

Ah, if only their data matched up with those Time Out style reviews.

 

[Binkie4]

Unbelievable that this should have been sent out. Truly stunned. Was the comment from Downing Street authorised. Who by?

I haven’t tried to look up the link at the bottom. Anyone know if this sort of accolade is usual?

 

[Sarah]

Listening to David's part made me wonder - has anyone seen the newsletter that the PACE team sent out? Is there a copy anywhere?

There used to be copies of all the newsletters sent throughout the trial online, posted by the investigators. They seem to have moved, though - the links to the newsletters from this ME-pedia page on PACE are dead.

Newsletter 3 (Dec 2008) included participant feedback and reference to intervention inclusion in the NICE Guideline.

 

[Sly Saint]

Listening to David's part made me wonder - has anyone seen the newsletter that the PACE team sent out? Is there a copy anywhere?

it appears that all links at

https://www.qmul.ac.uk/wolfson/research-projects-a-z/current-projects/projects/pace-trial.html

go to pages that no longer exist.

 

[Binkie4]

@rvallee
That newsletter could be dynamite. Is there any way you could help us identify who/ where/ when it was sent?

The veracity needs to be solid.
Unless absolutely true, and able to be shown to true, using it could rebound on the community and confirm the negative perceptions of us.

Does anyone else have access to any mid research newsletter?

 

[Esther12]

@rvallee
That newsletter could be dynamite. Is there any way you could help us identify who/ where/ when it was sent?

The veracity needs to be solid.
Unless absolutely true, and able to be shown to true, using it could rebound on the community and confirm the negative perceptions of us.

Does anyone else have access to any mid research newsletter?

Those newsletters in Sarah's post were all taken from the official PACE trail website. https://www.s4me.info/threads/lives...the-greatest-scandals.5821/page-4#post-109427

A lot of the links under 'Trial Information' now seem to be broken though:

https://www.qmul.ac.uk/wolfson/research-projects-a-z/current-projects/projects/pace-trial.html