Will The UK Establishment Finally Stop Denying The Reality Of ME? Huff Post

[Cheshire]

By Dr Simon Duffy

The PACE Scandal also demonstrates the powerful forces at work. PACE was a research programme to test two 'therapies' for people with ME - Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). Although these therapies did not prove effective, researchers amended the rules of the evaluation so that people who had got worse were counted as having benefited from these therapies.

Outside the UK the PACE research has been severely criticised; but the Countess of Mar believes that the UK media has been frightened into silence by the Science Media Centre whose board members include Sir Simon Wessely, one of the psychiatrists connected to the PACE scandal. Even more disturbing is that Mrs May has now asked Wessely to lead an Independent Review of the Mental Health Act 1983 - a decision heavily criticised by independent advocates.

http://www.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html

ETA/ Info on Dr Duffy: http://me-pedia.org/wiki/Simon_Duffy

 

[Jan]

The PACE Scandal also demonstrates the powerful forces at work. PACE was a research programme to test two 'therapies' for people with ME - Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). Although these therapies did not prove effective, researchers amended the rules of the evaluation so that people who had got worse were counted as having benefited from these therapies.

http://www.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html

 

[Esther12]

Thanks. Great to see more attention being brought to this stuff. There's a lot of stuff packed in that Huffington piece. PACE, the Science Media Centre, insurance COIs, the DWP... in a five minute read.

Some of it was a little loose, and could be seen as being unfair on PACE,but it can be hard to get all of the details into a short article like this.

 

[NelliePledge]

Good to have someone like Simon Duffy weighing in of course without the SMC influence this sort of article would have been in the Guardian......... Sorry but that really irks me

 

[Esther12]

Good to have someone like Simon Duffy weighing in of course without the SMC influence this sort of article would have been in the Guardian......... Sorry but that really irks me

I just searched for this piece on facebook to see what sort of response it was getting (not much so far) and saw Duffy saying "I've never had so much trouble getting my Huffington Post published."

Seems we've got a lot against us.

 

[Snowdrop]

I just searched for this piece on facebook to see what sort of response it was getting (not much so far) and saw Duffy saying "I've never had so much trouble getting my Huffington Post published."

Seems we've got a lot against us.

Perhaps we can give the article lots of traffic.

 

[NelliePledge]

I just searched for this piece on facebook to see what sort of response it was getting (not much so far) and saw Duffy saying "I've never had so much trouble getting my Huffington Post published."

Seems we've got a lot against us.

Hopefully that will only strengthen his support for ME community.

 

[Barry]

Good to have someone like Simon Duffy weighing in of course without the SMC influence this sort of article would have been in the Guardian......... Sorry but that really irks me

The SMC is simply setting itself up for an ever harder fall. More and more of the media is starting to get the bit between its teeth now.

 

[Barry]

Bl**dy good article!

 

[Esther12]

I just searched for this piece on facebook to see what sort of response it was getting (not much so far)

Actually, I just searched again and got different posts turn up. I don't think I understand facebook well enough to say what sort of response there is.

 

[Esther12]

The SMC is simply setting itself up for an ever harder fall.

I used to be really pleased about how bad the SMC was (what a great story it will make)... but they keep not falling! It has been so many long, long years.

 

[TigerLilea]

Actually, I just searched again and got different posts turn up. I don't think I understand facebook well enough to say what sort of response there is.

FB is notorious for posts not showing up for days on some people's newsfeed or pages, or going missing and then showing up again later on.

 

[Esther12]

FB is notorious for posts not showing up for days on some people's newsfeed or pages, or going missing and then showing up again later on.

I keep reading about how important FB is for spreading news stories, but I spend very little time on there. Maybe we should think a bit about how to use FB more effectively for campaigning, or spreading awareness of S4ME? If Putin can do it, so can we!

 

[Adrian]

I keep reading about how important FB is for spreading news stories, but I spend very little time on there. Maybe we should think a bit about how to use FB more effectively for campaigning, or spreading awareness of S4ME? If Putin can do it, so can we!

We have a facebook page but I don't think we have planned a strategy yet.

Also a twitter account https://twitter.com/s4me_info

 

[Helen]

We have a facebook page but I don't think we have planned a strategy yet.

Also a twitter account https://twitter.com/s4me_info

Great . Shouldn´t this be announced in a separate thread as it´s a bit OT here? Too good to be missed by interested people.

 

[adreno]

We have a facebook page but I don't think we have planned a strategy yet.

Also a twitter account https://twitter.com/s4me_info

Perhaps a "Spread the Word!" thread is in order, as @Helen suggests? If we are ready, that is...

 

[Trish]

Simon Duffy has written some really good articles on the Centre for Welfare Reform site about ME and problems with the welfare system etc.
This one for example:
http://www.centreforwelfarereform.org/library/by-az/in-the-expectation-of-recovery.html

 

[Wolfiness]

Some of it was a little loose, and could be seen as being unfair on PACE,but it can be hard to get all of the details into a short article like this.

Yes! It's a shift if it's PDW et al. who are now scowling at news articles.

 

[Esther12]

Yes! It's a shift if it's PDW et al. who are now scowling at news articles.

I find it hard to be consistently outraged when something manages to make them sound even worse than they really are. Still, in the long-run perfect accuracy about everything will serve us best. This article gets the key things right, and most of the details too.

 

[Little Bluestem]

Perhaps we can give the article lots of traffic.

Even if you don't have time to read the whole article, opening the link will register your interest in the subject.