A general thread on the PACE trial!

I think the grammar of that sentence is causing confusion.
It says:
... and individual symptoms of post exertional malaise and poor concentration or memory, ....
I think that refers to the 2 rows in the table for the 2 'individual symptoms' they picked from the list, namely 1. PEM and 2. poor concentration or memory.
They are not referring to 'individual symptoms of PEM', rather that PEM is one of the individual symptoms.

The thing that strikes me from that table is how many in all the groups had their PEM vanish within a year.

Possible interpretations of this:

a) they didn't understand what PEM is,
b) they had been persuaded to see PEM as 'healthy' - as a sign the treatment is working - 'no pain, no gain' etc.
c) to re-interpret crashes as having an infection.
d) that they had stuck with the initial stage of their treatment of cutting back to a base level of activity that doesn't set off PEM, and then hadn't actually increased their activity, in other words were actually pacing better than they had before they entered the trial, and were therefore having having fewer crashes.
e) they recovered - not supported by the recovery re-analysis.

 

An interesting question. I think of PEM as an exacerbation of all symptoms plus a few extras, rather than as a single symptom. I guess it depends how 'symptom' is defined.
I guess one could also pick them up on using the word 'symptoms' for 'Poor concentration or memory'.

 

From page 44 of GET therapists manual:
Long term goals (Six months or longer)
These may be functional activities, hobbies, or an exercise that the participant would like to do. It may be an activity they used to enjoy, or a new activity.
For example:
• Walking to the shops three times a week.
• Riding an exercise bike for twenty minutes every day.
• Weeding the garden for an hour at a time.
• Managing to vacuum the home all in one go.
• Swimming 20 lengths three times a week.

Short-term goals
It is helpful to break these long-term goals into smaller components, e.g. walking to the shops could be broken down into walking half- way to the shops in three months time. This goal can then broken down further into weekly or fortnightly exercise goals. Goals with more complex components, such as returning to play badminton, may require a number of individual goals corresponding to flexibility, strength, and endurance. The ‘Setting Goals: Breaking goals down into manageable sections’ worksheet will help to set short term goals.

NB: Participants may be tempted to set unrealistic goals for themselves. Ensure that goals set with participants are realistic and balanced: e.g. it would not be recommended to set goals that involve working 80 hours a week, playing football 5 times a week and staying out until 4 in the morning at weekends.

We've talked on other threads about GET approach getting renamed/regurgitated. Every time I read more about GET it strikes me more and more that because of the change of name and despite the fact that I was aware of the need not to do exercise and deliberately didnt do walking I did get hooked into a GET approach. I was encouraged in 2016 by the CFS ME clinic on their 'management programme' to set goals around activity and I decided that was decluttering my bedroom - sorting through and lifting, moving boxes of various sorts. As this didnt involve much walking I thought I was getting around the exercise aspect and I did make a start on this for a couple of weeks. I was naively doing exactly what they wanted. However I very quickly cottoned on to the fact that all I had to do was report progress without actually doing anything. I didnt do the activity I was telling them I was doing because I couldnt manage it. And after the first couple of weeks when I had taken holiday from my part time job so was able to cope fine with going to the clinic also had to reduce one of my working days to compensate for the day attending the clinic. I had been unable to manage 4 rather than 3 busy days. So I literally adjusted my activity back down to a manageable level, no overall increase in activity.


ETA above - for clarity
ETA incidentally since I stopped working last year I have actually been gradually doing this refurbishment work - partly through necessity - but I have coped because I had my energy on 3 days a week freed up.