The Mental Elf: Simon Wessely on PACE

[Sasha]

I actually think your comments were helpful. I would just have been repeating myself.

Well, now you're making me wish I hadn't asked Mental Elf to take them down. I don't know what I want!

 

[Sasha]

Oh! I see my comments have been removed as requested but leaving the petition one up (again, as I requested).

Best of both worlds, then - they've sat there all day and done some good and now I have voted with my feet (unfortunately, over 100 other people haven't but I still liked that gesture!).

 

[Jonathan Edwards]

Best of both worlds, then - they've sat there all day and done some good and now I have voted with my feet (unfortunately, over 100 other people haven't but I still liked that gesture!).

Right.!

 

[Ecoclimber]

In his cruise ship analogy, what Simmon Wessely readily admits is that the singularity of purpose in the PACE trial - as if by implication a favorable outcome was somehow predetermined - was to influence the social/medical policy of the United States concerning the treatment of ME/CFS patients.

"...HMS PACE But most often the ship does eventually dock in New York, with satisfied passengers, and a tired but relieved crew...

...In this blog I will argue that HMS PACE did make it successfully across the Atlantic. Small corrections to the route taken were made on the way, but these were of little significance. The fundamental mechanics of the ship remained water tight and at no time were the ship or its passengers in peril until it safely docked exactly where it was supposed to...." yea at the doorstep of the NIH.

The BPS cabal have unlimited amounts of money, power & prestige to hire $million dollar publicists who have access to the major UK media outlets & news networks, publishing houses, goverment agencies, medical/research journals, organizations, etc. to manage the message and to protect their image. What really appeared on the doorstep of the NIH/CDC was the HMS Contagion disguised as the HMS PACE flying the yellow flag with passenger/patients who were disguised as having ME/CFS under the Oxford criteria.

Not to be a Debbie Downer, at this time, there is no way that I can see how any of the ME/CFS patient organizations have the resources to counter such organized efforts and strategy. What's at stake is NOT the patients welfare but funding outlays by goverment agencies and the medical/health/disability insurance industry as stated by various members of the BPS cabal. They are even willing to sacrifice one their own to keep the message on track. It's like playing a game of Whack-A-Mole...sigh.

-

 

[Scarecrow]

In his cruise ship analogy, what Simmon Wessely readily admits is that the singularity of purpose in the PACE trial - as if by implication a favorable outcome was somehow predetermined - was to influence the social/medical policy of the United States concerning the treatment of ME/CFS patients.

Hmmmm, I wondered if that was a deliberate or unconscious suggestion on his part.

You've convinced me.

 

[jimells]

'Prosperous'?

I suggest he might want to save some of those insurance industry bribes for his legal defense.

A large clinical trial might be said to resemble an ocean liner, which is leaving Southampton to sail to New York.

What was the name of that unsinkable ship that left Southampton for New York about a hundred years ago? Oh yeah, it's right there in the same paragraph. What an idiot - doesn't he realize he's comparing his own study to the Titanic?

He really needs to study "foot-in-mouth" disease,

 

[Daisymay]

Contrary to what Wessely said in his mental elf blog, PACE wasn't a randomised controlled trial.

He said: "Reading some of the criticism, I am struck that some of the critics are not familiar with the fundamental strengths of the randomised control trial, and why medicine continues to value it so highly. "

And : "What makes a good trial and how does PACE measure up?
So what does the literature on randomised controlled trials tell us about the factors that are known to influence or bias the results of trials?"

He is giving the impression to readers it was a gold standard RCT, but it wasn't, SMC group wasn't a control group and the paper didn't call itself a RCT, see here:

The title of the PACE trial:
"Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial"

And in the paper:
"Methods - In our parallel-group randomised trial, patients meeting Oxford criteria for chronic fatigue syndrome"

Though the protocol paper called it a RCT in the title:
" Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurol 7:6. doi: http://dx.doi.org/10.1186/1471-2377-7-6"

And in the protocol paper in "Type of Design" they also said it was a RCT - it wasn't a RCT.
"Type of design - A four arm, randomised multi-centre parallel group controlled trial of patients who meet operationalised criteria for CFS/ME, with follow-up for 52 weeks (see Figure 1)."

Can someone who is on twitter point this out to Coyne please?

 

[charles shepherd]

This has been posted elsewhere by someone with a very good sense of humour:

NEW CANARD PASSENGER LINE

Southampton to New York in 5 days

Canard has announced the successful first voyage of its flagship, the Queen Mary Pace. Built in Oxford to rigorous specifications, this sleek and sophisticated liner, with the latest engines built with Graduated Energy Transmission, has taken the world by storm with the first crossing in just 5 days.

Setting out from Southampton on 18th March, 2005, amid cheers from admiring crowds in the medical enclosure, it left harbour looking every inch the awesome and standard-setting giant that it is.

With everyone settled in and enjoying the cruise, the captain called together his senior crew and decided to make some minor adjustments to the course plotted. Informing the management back at Canard, these quickly took place, and a mere 5 days later, passengers found themselves at the quayside in Dublin.

“All changes were rigorously discussed with the senior crew,” explained the captain. “It was felt important to make changes that truly reflected the potential of the new engine arrangement. Dublin is an entirely normal destiny for cruise liners.”

A number of passengers complained, but, as management at Canard explained, “There are always vexatious passengers on any cruise. All decisions were taken in their interests, and, naturally, it would be inappropriate for passengers unfamiliar with the ways of the sea to be allowed to comment on such matters. The crew had unusually tranquil seas and clement weather to contend with: it is too easy to criticize from the sidelines.” The UK government, which invested heavily in this engineering miracle, recommends that everyone should experience this very effective service.

When questioned, 22% of the passengers said that they thought Dublin was much better or even very much better than they had realized: but another analysis showed that, actually, none of them ever ended up in New York, even two years later.

 

[CFS_for_19_years]

I have no words, mainly because it's a lot to take in. All of you who can actually write have my full support. In the meantime, please enjoy this "alternate" cruise ship analogy.

ETA: Charles Shepherd's post came in the same time mine did. Interesting.

 

[SOC]

In his cruise ship analogy, what Simmon Wessely readily admits is that the singularity of purpose in the PACE trial - as if by implication a favorable outcome was somehow predetermined - was to influence the social/medical policy of the United States concerning the treatment of ME/CFS patients.

He can't be satisfied with screwing his own compatriots?

 

[jimells]

I will give him one thing, he knows how to manage internet "persona" it is as if he hired an Internet image firm.

Well he does have the Science Media Centre to manage PR for him. They even brag about him being a "founding father" or something.

 

[Seven7]

Well he does have the Science Media Centre to manage PR for him. They even brag about him being a "founding father" or something.

We desperately need that so our internet presence is about education, what cfs really is and weed out all this garbage.

 

[Graham]

Thanks, @charles shepherd! I'd have got in touch with Leela and done it in rhyme if we had had longer. Anything to emphasise just how fatuous it all was. Why answer technical questions when you can sail off across the Atlantic in an analogy?

 

[Kyla]

Thanks, @charles shepherd! I'd have got in touch with Leela and done it in rhyme if we had had longer. Anything to emphasise just how fatuous it all was. Why answer technical questions when you can sail off across the Atlantic in an analogy?

This is awesome.
Is it okay to repost it on other social media?

 

[Isabelle]

Ah Sir Simon, if only you would just apologise and move on. To carry his analogy further I suggest that the (not so) good ship PACE is now floundering on the rocks and rapidly taking on water. Hopefully soon to sink down down beneath the murky waters of retraction, within the straits of “clinical trial amateurism”, in the ocean of indefensible fallacy. Time to abandon ship.

 

[Bob]

NEW CANARD PASSENGER LINE

Southampton to New York in 5 days

Canard has announced the successful first voyage of its flagship, the Queen Mary Pace. Built in Oxford to rigorous specifications, this sleek and sophisticated liner, with the latest engines built with Graduated Energy Transmission, has taken the world by storm with the first crossing in just 5 days.

Setting out from Southampton on 18th March, 2005, amid cheers from admiring crowds in the medical enclosure, it left harbour looking every inch the awesome and standard-setting giant that it is.

With everyone settled in and enjoying the cruise, the captain called together his senior crew and decided to make some minor adjustments to the course plotted. Informing the management back at Canard, these quickly took place, and a mere 5 days later, passengers found themselves at the quayside in Dublin.

“All changes were rigorously discussed with the senior crew,” explained the captain. “It was felt important to make changes that truly reflected the potential of the new engine arrangement. Dublin is an entirely normal destiny for cruise liners.”

A number of passengers complained, but, as management at Canard explained, “There are always vexatious passengers on any cruise. All decisions were taken in their interests, and, naturally, it would be inappropriate for passengers unfamiliar with the ways of the sea to be allowed to comment on such matters. The crew had unusually tranquil seas and clement weather to contend with: it is too easy to criticize from the sidelines.” The UK government, which invested heavily in this engineering miracle, recommends that everyone should experience this very effective service.

When questioned, 22% of the passengers said that they thought Dublin was much better or even very much better than they had realized: but another analysis showed that, actually, none of them ever ended up in New York, even two years later.

I'd have got in touch with Leela and done it in rhyme if we had had longer. Anything to emphasise just how fatuous it all was. Why answer technical questions when you can sail off across the Atlantic in an analogy?

Graham! Inspired! Hilarious!

 

[Graham]

Hi @Kyla ! If I ever produce anything worth repeating (and if it works for monkeys typing pieces from Shakespeare it must work for me) you are only too welcome to us it! As is anyone else.

 

[Kyla]

Hi @Kyla ! If I ever produce anything worth repeating (and if it works for monkeys typing pieces from Shakespeare it must work for me) you are only too welcome to us it! As is anyone else.

Thanks @Graham
I think you are a very repeatable (and humorous) monkey

 

[Woolie]

Ha, @Graham, just noticed that you called your shipping company the Canard.

Well, if it quacks like a duck....

You're more polite than me, I'd have called it the Connard.

 

[Woolie]

Oh, woops, sorry that was @charles shepherd with the Canard shipping line. Thanks for making me laugh out loud Charles! Does this mean I can do the graphics again?