Video: The PACE trial: a short explanation, Graham McPhee

LightHurtsME said:
Hi Esther, I looked at the link but can't find what you mean - can you please let me know what/where it says how old this participant was?
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I see it now, figure 2, on the blue line, what looks like one participant aged 75-84 years.

ETA: actually, it is a percentage of participants plotted on the left x-axis - so not sure if it was one person?
 
LightHurtsME said:
I see it now, figure 2, on the blue line, what looks like one participant aged 75-84 years.

ETA: actually, it is a percentage of participants plotted on the left x-axis - so not sure if it was one person?
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Actually, I thought there was more info there than there is. In my notes I've got that the oldest participant was 77 at randomisation but I'm not sure where I got that info from now.
 
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Another excellent video, made the point very clearly to me that taking the mean was completely inappropriate. For those of us not clever enough to nitpick, it's just right.

Also solved the mystery of why people keep laughing at my trousers. A few years ago I read that the average man has 1.98 legs, so since then, being of average height, everytime I've bought a new pair of trousers I've been cutting a bit off the bottom of the left leg to make sure they look normal. I've finally realised my mistake and shall stop doing it forthwith.
 
In truth, people seem wedded to the idea that to get an average you must add numbers and divide (the mean). Back when I was teaching, down came the edict that when we wrote reports and entered exam marks, we should also write down the average mark in the class. The maths dept explained that the most sensible thing to do, if parents were to be given a proper idea of the class performance, was to write down the middle score (the median), together with the quarter and three-quarter scores. Needless to say, we were the only department that did: all the rest kept adding up the scores.

One of the biggest problems in maths was that when something was wrongly taught in primary school, such as an average means you have to add and divide, or a square is not a rectangle, it is almost impossible to shake it from students' minds. Perhaps that's what happened to the PACE authors. Perhaps they had bad teachers. Should Trish and I offer them some private tuition - Complete Beginners' Training?
 
Graham said:
In truth, people seem wedded to the idea that to get an average you must add numbers and divide (the mean). Back when I was teaching, down came the edict that when we wrote reports and entered exam marks, we should also write down the average mark in the class. The maths dept explained that the most sensible thing to do, if parents were to be given a proper idea of the class performance, was to write down the middle score (the median), together with the quarter and three-quarter scores. Needless to say, we were the only department that did: all the rest kept adding up the scores.

One of the biggest problems in maths was that when something was wrongly taught in primary school, such as an average means you have to add and divide, or a square is not a rectangle, it is almost impossible to shake it from students' minds. Perhaps that's what happened to the PACE authors. Perhaps they had bad teachers. Should Trish and I offer them some private tuition - Complete Beginners' Training?
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I know you are just giving them the benefit of the doubt but just to point to others there were statisticians involved who have done all sorts of quite complex statistical analysis on the data, more complicated than the average statistical analysis. So I’m not inclined to treat it all as if people who just had high maths (or lower) did the study.
 
Either they did not know what they were doing with the stats manipulations. Which is incompetence.

Or they did know. Which is worse.

White has form on conveniently forgetting his previous work that doesn't support his claims.
 
I know I'm being too kind to them, but I think it is likely that some of the larger team were not aware of what was happening, or had no ability to affect it. I know that in such circumstances people should resign, but if you have a family and a mortgage, and very senior people are making the decisions, it's difficult. I would have loved to have a copy of any discussion between the statisticians on what they knew about and what was slipped in.

As Head of Maths, I was part of senior management, and am only too aware of the pressures to accept edicts from on high, especially when you have no capability or responsibility of changing them.

But I think the behaviour of the senior members of the team, and of those who have supported them, while simultaneously denying any involvement, speaks for itself. They are very highly educated (which is not the same as being highly intelligent) so they must have either been part of the deliberate design to manipulate the results, or just have been content to let it pass.

I'm working on video 3, but this time I would like some input from folk, especially as it is going to be quite hard-hitting. The point is that it must be aimed at general understanding, not at a technical audience, so it isn't going to be nit-pickingly precise: the SS PACE-CRITIC can be allowed to have a few minor leaks, just as long as none of them are big enough to cause a change in course. I'll set up a private conversation with anyone who would like to be involved - please let me know: if you click "LIKE" on this message, I'll include you into the conversation.
 
Thanks for the video @Graham. I wondered if it would have been clearer if you had overlaid a graphic of a normal distribution at 80 +/- 20 over the Bowling data when you talk about it at around 6:15, showing the difference between the distributions they kind of assumed and reality. It might have been a bit more powerful than just words at that point.
 
Michael S said a few times that if they hadn't changed the recovery level (to 60) then lots of healthy people would have CFS (or something like that) all said in a way that mocked the patient complaints.

Strangely, the statistician involved was Betty Dowsett's son in law. He disappeared from the scene after a controversy I can't remember. I think he was an MRC person.
 
Mithriel said:
Michael S said a few times that if they hadn't changed the recovery level (to 60) then lots of healthy people would have CFS (or something like that) all said in a way that mocked the patient complaints.

Strangely, the statistician involved was Betty Dowsett's son in law. He disappeared from the scene after a controversy I can't remember. I think he was an MRC person.
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He was Anthony Johnson.

I don't think he disappeared. He did leave the MRC in 2014.

As 'only the statistician' it's true he wouldn't normally be expected to be involved with the publicity surrounding the paper. However, since he was the statistician and so much criticism has centred on the trial's use of statistics, it does seem odd that he has not been involved in the debate at all.
 
Amw66 said:
@Action for M.E.
This perhaps illustrates the main issue and explains why CBT and GET don' t work.
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Thank you @Graham, I will share this with the team.

I'm sorry about the time it's taking me to respond to questions/posts - I have had to focus on other things in the office, but I hope to dedicate some time today and next week to addressing issues raised here.

Clare Ogden
Head of Communications and Engagement
Action for M.E.
 
Solve ME/CFS Initiative shared it on Facebook


One of the comments on their post
Love it! My daughter started her 1st cycle of CBT for CFS , age 12 in 2011 and has just completed her final review after 3 cycles in 2018, 3 weeks before her 15th birthday. The lengthy questionnaire she was asked to complete shows some improvement and the parent questionnaire too BUT in real terms..she no longer attends school, I no longer work during the day and have decreased my work hours to 2 evenings per week. In real terms, we have adjusted our lives to accommodate CFS, we have grown used to living this way. It's our new normal and everything looks hunky dory on a questionnaire! Thank you for the video. Oh, btw..The clinic has changed its name anyway..now called 'Persisting Physical symptoms' rather than CFS Unit..changed its remit.
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Esther12 said:
Actually, I thought there was more info there than there is. In my notes I've got that the oldest participant was 77 at randomisation but I'm not sure where I got that info from now.
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It looks on the table as though White only sent the information that there were 21 people in the age group 60+ (i.e. 3%), and it looks as if Couch distributed them across the age groups 65-74, 74-84, 85+ to match the Bowling spread. I don't see any other direct information about the ages of the people actually in the trial.

And, of course, Couch continues to use mean minus s.d. as though it was a reasonable thing to do, which it is not.
 
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