The Fable known as The PACE Trial

May 1, 2014

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

PACE Recovery Song Video 6Once 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.)

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35 comments

{ 35 comments… read them below or add one }

Firestormm May 1, 2014 at 3:46 am

Thanks – as ever – to the work of Graham, Janelle, and Bob – and the others – for putting this series together and keeping us so well informed. I sincerely hope the song will become a sensation at least among our community. Brilliant! :balloons::balloons:

alex3619 May 1, 2014 at 4:20 am

Where is a Grimm when you need one? ;)

When I first saw the song clip I listened to it three times. :) I never do that.

taniaaust1 May 1, 2014 at 4:32 am

I cant wait to be able to listen to this (I wonder if it will play on a friends ipod?), shows how little I know about technology. Thanks to those who did this.

Nielk May 1, 2014 at 8:16 am

Terrific work, Graham, Bob and Janelle! Thank you.

Simon May 1, 2014 at 3:48 pm

Thanks to Graham, Janelle and Bob for making such a dull and dire subject entertaining. Great work – do hope this goes viral on ME Awareness day.

ahimsa May 1, 2014 at 4:10 pm

I love the latest videos!

Graham, Bob and Janelle are truly geniuses! ( or is it genii? ;) )

However, I have no idea how I got a credit for helping with video six. Yes, I do remember reviewing an early version of the lyrics. But my recollection is that the few *very minor* suggestions that I made on on those lyrics did not work and so they were not added.

So, I don't feel like I really did anything. Other than maybe some encouragement?

But thanks, anyway, for the shout out!

leela May 1, 2014 at 7:20 pm

Yeah, I don't deserve a writing credit either (Graham is as generous as he is clever!) All I really did was cheerlead:balloons:

alex3619 May 2, 2014 at 1:54 am
Simon

Thanks to Graham, Janelle and Bob for making such a dull and dire subject entertaining. Great work – do hope this goes viral on ME Awareness day.

I think that might be a good goal for ME day .. spread the video!

ukxmrv May 2, 2014 at 7:10 am

I congratulate all the team for their incredible work and the videos.

Would also like to mention all the ME and CFS campaigners who have also worked against the PACE since it first raised it's ugly head. I'm not sure how many of them belong to PR and also who would want their name mentioned.

Professor Hooper and Margaret Williams spring to mind. Also the people who have been putting in the FOI requests. The patients who demonstrated outside the MRC years ago. All the people who have written to the medical journals over the years. The patients who obtained all the research information in the early years before the trial started and kept it safe for later. The poor patients who actually did the PACE trial and who wrote about it later.

Better stop now before it sounds like a academy award win (and I've done nothing to deserve it!)

Thanks to everyone who has been fighting against PACE and for so long now.

CallieAndToby May 2, 2014 at 10:18 am

Thanks for including me Graham, you've done a wonderful job here. Great job Leela, you sounded awesome!
My friend listened to it and said, "everyone sounds so tired" – ironically funny.

Graham May 4, 2014 at 12:33 pm
ahimsa

I love the latest videos!

Graham, Bob and Janelle are truly geniuses! ( or is it genii? ;) )

However, I have no idea how I got a credit for helping with video six. Yes, I do remember reviewing an early version of the lyrics. But my recollection is that the few *very minor* suggestions that I made on on those lyrics did not work and so they were not added.

So, I don't feel like I really did anything. Other than maybe some encouragement?

But thanks, anyway, for the shout out!

Hi Ahimsa: I've only just found this thread, so sorry about the delay. You put in a lot of amendments to make the words fit, but most importantly of all, you wrote verse 2, with the butt-kicking "Fantastic…."

Graham May 4, 2014 at 12:37 pm
leela

Yeah, I don't deserve a writing credit either (Graham is as generous as he is clever!) All I really did was cheerlead:balloons:

Not you too, Leela! Not only did you keep plugging at me to get the right words in the right place, and rephrasing several bits, but you starred in the singing"

Graham May 4, 2014 at 12:39 pm
CallieAndToby

Thanks for including me Graham, you've done a wonderful job here. Great job Leela, you sounded awesome!
My friend listened to it and said, "everyone sounds so tired" – ironically funny.

It's been fun, and your contribution was great!

1000+ watches of the banjo song so far (I don't know if Youtube tracks all the linked viewings as well), and 1400 on the explanatory video 7. The only odd comment that I have had is from someone hoping that I wasn't mocking hillbillies! I pointed out that the hillbilly sunflowers had actually done a good job in spotting the analytic flaws in the PACE study. I guess I can see where she is coming from, but here in the UK we rather like our wide variety of regional dialects, tastes and styles. Adge Cutler and the Wurzels spring to mind.

peggy-sue May 4, 2014 at 12:45 pm

You were a wonderful team! Every single one of you.:balloons:

:thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:

leela May 4, 2014 at 2:01 pm

Well, @Graham, everyone was just so great, I can't stop listening to it! And I must send a special shout-out to Chloe, Ruby and Isabel, who just tie the whole thing up in a bright, shiny, incredulous ribbon :)

Graham May 4, 2014 at 4:38 pm

Chloe, Ruby and Isabel have a dad (a friend) who went down with ME just a few years ago. Another ME friend, Dez, worked with me and made all the extra suggestions and bits that really made it work as a song.

Bob May 4, 2014 at 4:44 pm

Graham will be cross with me for saying this, but I'd also like to add that my role in this project was limited to assisting Graham with the wording of the second video, and some other general cooperation. The videos are, in essence, Graham's creation. At least, he directed them and brought everyone together to work on them. I just helped. Graham absolutely insisted on including my name, so there it is. We often work on projects together, and Graham is always great to work with, as many of you will know.

ahimsa May 4, 2014 at 5:09 pm
Graham

Hi Ahimsa: I've only just found this thread, so sorry about the delay. You put in a lot of amendments to make the words fit, but most importantly of all, you wrote verse 2, with the butt-kicking "Fantastic…."

I have to laugh because I wasn't being modest earlier. I honestly have no memory of doing this! o_O

:rofl: That's par for the course, I guess! :rofl:

At least I didn't sing and then forget about it. Right? RIGHT?! :eek::D

WillowJ May 4, 2014 at 5:43 pm
leela

And I must send a special shout-out to Chloe, Ruby and Isabel, who just tie the whole thing up in a bright, shiny, incredulous ribbon :)

That line is truly fabulous. :)

I really enjoy the whole video.

alex3619 May 4, 2014 at 10:39 pm
ahimsa

:rofl: That's par for the course, I guess! :rofl:

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.

biophile May 5, 2014 at 7:28 pm

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.

Leopardtail May 14, 2014 at 9:40 pm

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

user9876 May 15, 2014 at 12:25 am
Leopardtail

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.

golden May 15, 2014 at 4:31 am
biophile

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 :)

Graham May 15, 2014 at 4:50 am

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.

Graham May 15, 2014 at 4:51 am

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.

golden May 15, 2014 at 5:16 am
Graham

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 :)

leela May 15, 2014 at 7:44 am

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

Graham May 15, 2014 at 10:33 am

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 May 15, 2014 at 10:45 am
leela

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

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

Leopardtail May 15, 2014 at 1:40 pm
user9876

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.

Leopardtail May 15, 2014 at 1:41 pm
Graham

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.

Graham May 15, 2014 at 2:55 pm

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.

Sean May 15, 2014 at 9:36 pm

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. :p

Leopardtail May 16, 2014 at 4:41 am
Graham

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 ;-)

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