A general thread on the PACE trial!

Would be treading a fine line. Often journalists promise an expose and end up with the opposite portrayal - hypothetical: how patients are anti-science/holding back science and rejecting treatments

 

Yes, I suppose you're right it could have gone either way.

 

It was a Newsnight piece - short but potentially to the point.
It was stopped because the team asked for independent statistical advice on the PACE trial and the advisor said it was 'not that bad'. The journalist, Michael Buchanan, had seemed to understand why it was that bad but either he had not fully understood or decided he might be getting himself into trouble I guess. They have some footage of me talking but it was filmed the night of the Grenfell Tower disaster and interest was elsewhere.

 

I doubt it would have resulted in a negative piece. The project was initiated by a journalist with a friend with ME. The impetus was to be on the patients' side. I suspect they concluded that it was going to be difficult to put something out without a reply and that trying to get a fair piece into 8 minutes was unrealistic.

 

not sure if this has been posted or not.
PACE trial newsletter 2008 issue 3 re 2 1/2 year follow up study
https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/participantsnewsletter3-1.pdf

 

It's been discussed before (this is where they discuss the NICE guidelines recommending CBT and GET, but no mention of APT or SMC), but I feel like there's always new bits that seem odd when re-reading old PACE info.

eg they told participants:

Seem a bit of an odd thing to do. Also, this was a study with no control group that was discussed here: https://www.s4me.info/threads/incre...n-patients-with-cfs-2008-de-lange-et-al.7465/

 

https://twitter.com/user/status/1089580437310185473

 

So it's been revealed that Blanchflower is a friend of Peter White (bravo to those who found it, I checked for associations myself but missed it by checking only Wessely and Sharpe ), hence his bizarre obsession with PACE (rather than the general psychosocial debate).

Unfortunately he seems to have a large following. I have seen at least one retweet (a particularly nasty one at that) from well-know economist Brad DeLong, who has a much larger audience. Blanchflower blocks anyone who shows him wrong, though, so don't bother. He's mostly limited to insults and name-calling so far, with a good dose of logical fallacies.

Similar to what we have seen with the Cochrane reactions from seemingly random people, who mostly turned out to have been connected to some of the PACE team, or the weird ideological whatever-it-is at Spiked.

Normally this would be the work of the SMC. Instead this seems to have been a personal appeal from White to his friend(s). It seems pretty emotional and personal so I wonder if the tides are turning behind the scenes and the team is starting to fear accountability could befall them. As they should, frankly, the principal investigators' career will not recover once the scandal finally breaks open.

 

The usual thing with them: run a smear campaign against the characters of the people criticising their science, rather than stand up and be counted defending their science. They might as well hire a sky writer to advertise they have no solid science-based defence of their science. If this were a real scientific debate, very little of what they say would be allowed I suspect.

 

I thought Danny Blanchflower was a footballer in the 1960s. Does this professor actually exist?
If this is the new publicity agent then things are looking a bit thin.

 

Danny Blanchflower has more than 60.000 twitter followers, including some influential people. Some of them might get interested in what’s the fuss about. For some reason unknown to me, Blanchflower always retweets the message he is responding to. So his followers are also seeing some of our responses. Some might get upset that he is calling vulnerable patients ‘whiners’. So I think it might be useful to keep using calm and reasonable responses to his tweets.

 

His actual name is David Blanchflower, and he seems like an influential labour economist. https://en.wikipedia.org/wiki/David_Blanchflower

 

Might be good therefore if somebody could gently introduce a tweet of all the MPs who spoke out in the House of Commons last Thur. Even if he does not openly call them whiners, it will be evident that he implicitly does.

Interesting that he is essentially a bean counter, and so his research leanings might be driven by notions of cost cutting ...

https://en.wikipedia.org/wiki/David_Blanchflower

 

As well as the ones we got following the Cochrane report where "random" academics were seemingly shocked, *SHOCKED* I tell you, about unspecified misconduct that was, well, unspecified, but surely worthy of the harshest condemnation and performative public shaming. Total coincidence that most happen to be friends or connected to the PACE researchers, surely.

Especially along with polite comments mostly asking "wait, what misconduct, it doesn't say, what are you accusing us of?". I don't know how big of an argument but this strategy of attacking us with unspecified accusations of the worst behavior has lead to angry rhetoric from complete strangers who seem willing to consider us guilty-as-charged of... something.

It's bad enough on its own but that it comes from academics and public figures in coordination with a charity whose mission is science communication, this is a few orders of magnitude above "unbecoming".

 

I am puzzled as to why this chap is tweeting now. Is this the response to the HoP debate that so far has been curiously missing?

 

Seems so. It looks like he's trying to bait patients into emotional responses.

 

Apparently Pete is his mate (EDIT: I think this tweet was found by MEMilitant, I first saw it on his twitter feed).
https://twitter.com/user/status/782294297794252800

 

I'm thinking there may be things happening behind the scenes. In some tweets he's bordering on histrionics. It seems deeply personal and emotional, likely an appeal from White.

It's a very fragile house of cards, after all. Once things start unraveling there won't be much left standing of this whole disaster. That must be unnerving. I heard CBT may be good for that.

 

Some tweets are so absurdly stupid it's hard to believe it's not an act.