The Fable known as The PACE Trial

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Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...

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Once upon a time, long, long ago a king and queen ruled over a distant land. The queen was kind and….

Whoops, sorry there! I got confused for a moment. Wrong fantasy tale...

Several years ago a team of psychologists and psychiatrists published the first of their fables about the effectiveness of CBT (and graded exercise) in treating ME/CFS. It was known throughout the world as “The PACE Trial”.

A group of valiant, honest crusaders, mostly members of Phoenix Rising, struggled diligently and bravely to produce an analysis of the faults of the trial and, hosted by Phoenix Rising, published their report.

Inevitably, the medical world ignored us.

Thankfully, in addition to our analysis, many others sent letters to a variety of medical journals, containing scathing scientific analysis, creating havoc in their wake.

But, lacking their linguistic expertise, Graham decided to take a different, satirical approach, and calling on the support of friends and colleagues, and on the graphical skills of his son, Ian, created a series of videos illustrating some of the absurdities of the PACE trial and its subsequent series of papers.

You can access these videos from http://www.youtube.com/user/MEAnalysis/videos

The latest two offerings focus on the claims that CBT promotes recovery from ME/CFS:

Video Six: ME 'Recovery' Song​

Video Seven: How's THAT Recovery?!​

The song, a hillbilly sunflower animation, showcases the talents of people with ME/CFS from around the world: friends, friends of friends, and online volunteers.

The song came first and was written by Graham, Leela and Ahimsa, with the theme tune to the Beverley Hillbillies in mind, and it was very fortunate that GarageBand (Apple music creation software) had a banjo jingle that really suited it. The music is pure GarageBand, blended, along with the singing, by Dez.

Video 7, like the ones before, put together a lot of work by many friends here, trying to simplify a very complex and muddled situation.

Graham, Janelle, and Bob

(Some of the earlier videos have been translated into German, Norwegian and Czech, so if anyone out there wants to translate any of them into other languages, we'd be happy to help.)

Support Phoenix Rising​

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There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

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That's par for the course, I guess!

You would be playing well under par, to use the golf parlance. I have trouble remembering this morning. Last week? There had to be one, reason tells me so. Last year? Just the facts and a few flashes of memory.

Thank you to everyone involved. I am happy to see song and sarcasm being used more. Our technical responses reach out to those who are very interested, and can be read by professionals in the field, but to reach the wider public and wider patient groups we need more easily accessible stuff.

 

Well done all! The song and chorus is surprisingly catchy. Cheeky visual aids too: stretching the truth, pulling a rabbit out of a hat (magic trick), a flying pig for every chorus, fake as a 3 dollar bill, and the smell of rubbish.

Every one of those themes applies to so-called "recovery" in the PACE Trial.

To anyone still into reasonable critique of the PACE trial, keep up the good work.

 

Graham,

I checked the SF-36 website today and it indicated that 50 not 100 is the average score in version2. Which version was used in the trial and what is considred normal outside of pace for that version?

Leo

 

Graham,

I checked the SF-36 website today and it indicated that 50 not 100 is the average score in version2. Which version was used in the trial and what is considred normal outside of pace for that version?

Leo

There is a recommendation to normalise the scores with country specific distributions. So that the mean becomes 50. But the PACE trial didn't do this.

Personally I think the normalisation is a little dodgy because the mean and standard deviation don't make sense given the shape of the distribution. I think they should also quote medians and percentiles.

 

Well done all! The song and chorus is surprisingly catchy. Cheeky visual aids too: stretching the truth, pulling a rabbit out of a hat (magic trick), a flying pig for every chorus, fake as a 3 dollar bill, and the smell of rubbish.

Every one of those themes applies to so-called "recovery" in the PACE Trial.

To anyone still into reasonable critique of the PACE trial, keep up the good work.

thanks for a little taster of the song - it sounds great. Unfortunately i cant access it on my technology so it was nice to have a little glimse until i can

 

Yes, User9876 is right. The distribution of scores for healthy people is so heavily clumped at the top end, with a slight tail downwards, that trying to pretend it can be manipulated to form a Normal Distribution, with a mean of 50, is ridiculous. Remember that the scores jump in units of 5, so really from 85 to 100 is only 4 marks.

The marks in IQ tests are manipulated to have a mean of 100 and, I think, a standard deviation of 25, but that is reasonable because there is a wide range of scores, equally balanced around the mid-point. For healthy folk, the mid-point of the sf-36 would be 100, so it isn't possible to have scores balanced on either side. It would be as inappropriate to use data for the whole population, including those with poor health, as it would to put together the heights of males of any age to determine a distribution for male heights.

Non-statisticians could argue that it didn't matter: that it was simply a matter of rescaling it to get an average of 50, but they are wrong. The term "normalise" implies that a Normal Distribution is being scaled up or down, and the whole point is to use it for comparison with other scales, but you can't compare scales which have different shapes.

I'm guessing they are using the same technique as they do in some areas of education, to "normalise" to a mean of 50 and a standard deviation of 21. If we do that for skewed data such as individual income, UK 2008/9, then we get a mean of 50, but half the population score under 44, a quarter score under 39, and those who don't earn anything at all score 31. In contrast, those on £100,000 would get a score of 102.

 

Hi Golden. If you send me a PM with an email address, I could send you the song alone, together with a couple of screen grabs.

 

Hi Golden. If you send me a PM with an email address, I could send you the song alone, together with a couple of screen grabs.

Ah thanks very much graham

But what it is, is that i am on pay as you go. And i no longer get unlimited mb. But only 2,000 a month i think it is (cant remember) - but if i watch youtube after a video or two i run out and am then disconnected for the month.

What i really need to do is find a new psy as you go deal which allows me to have unlimited data again - its on my list. I have no landline - only mobile so its a nuisance

 

@golden, Pr. Wessely could probably help you with a "psy as you go" plan.

 

Ah, the joys of pay as you go. We used to have them dotted around most town centres in the old days: one old penny for admittance into the gents' or ladies' conveniences. There wasn't a download limit in those days though: good job too sometimes.

Wessely and Co would not be able to GET anything useful for us though.

 

@golden, Pr. Wessely could probably help you with a "psy as you go" plan.

Ha ha so long as he did it Gangnam style - i would take him up on that.

 

There is a recommendation to normalise the scores with country specific distributions. So that the mean becomes 50. But the PACE trial didn't do this.

Personally I think the normalisation is a little dodgy because the mean and standard deviation don't make sense given the shape of the distribution. I think they should also quote medians and percentiles.

I did find it odd that the normal score was not 100 as it clearly should be.

 

Yes, User9876 is right. The distribution of scores for healthy people is so heavily clumped at the top end, with a slight tail downwards, that trying to pretend it can be manipulated to form a Normal Distribution, with a mean of 50, is ridiculous. Remember that the scores jump in units of 5, so really from 85 to 100 is only 4 marks.

The marks in IQ tests are manipulated to have a mean of 100 and, I think, a standard deviation of 25, but that is reasonable because there is a wide range of scores, equally balanced around the mid-point. For healthy folk, the mid-point of the sf-36 would be 100, so it isn't possible to have scores balanced on either side. It would be as inappropriate to use data for the whole population, including those with poor health, as it would to put together the heights of males of any age to determine a distribution for male heights.

Non-statisticians could argue that it didn't matter: that it was simply a matter of rescaling it to get an average of 50, but they are wrong. The term "normalise" implies that a Normal Distribution is being scaled up or down, and the whole point is to use it for comparison with other scales, but you can't compare scales which have different shapes.

I'm guessing they are using the same technique as they do in some areas of education, to "normalise" to a mean of 50 and a standard deviation of 21. If we do that for skewed data such as individual income, UK 2008/9, then we get a mean of 50, but half the population score under 44, a quarter score under 39, and those who don't earn anything at all score 31. In contrast, those on £100,000 would get a score of 102.

Understood, Graham. Was version 6 of SF-36 used?

I would add that if you starting messing around in that way, then you would also have to normalise for age since 100 and a 10 year old have very different activity levels.

 

Understood, Graham. Was version 6 of SF-36 used?

Glad it made sense to someone. According to the protocol they used version 5.0 (01.02.2006)

They did use the Borg scale though. For fans of Star Trek, that could explain a lot.

 

Ah, the joys of pay as you go. We used to have them dotted around most town centres in the old days: one old penny for admittance into the gents' or ladies' conveniences. There wasn't a download limit in those days though: good job too sometimes.

So you were the dreaded phantom toilet filler of old London town?

Well that explains a lot.

 

Glad it made sense to someone. According to the protocol they used version 5.0 (01.02.2006)

They did use the Borg scale though. For fans of Star Trek, that could explain a lot.

Why do brain washed collectives seem to appropriate ;-)