I remember getting a followup questionnaire I think maybe around 2010? But when I've asked Kings for the data, they would only send a diary note of my therapist appointments from the Unit saying the actual data is offsite, so I sent a request to Kings actual data unit and got crickets back...
Just before the Tribuanal that Alem and others did to get the data forthe reanalysis I accidentally spoke to Peter White, I called the number on the Pace web page and got straight through to him. He seemed like a decent chap, was somewhat horrified I had gone severe and the local Unit in Northumberland wouldn't help unless I could get to them (which I couldnt') and told me to contact Trudie Chalder direct as each centre held it's OWN data. But then I got a bit bogged down with other things and never got around to asking again.
I do remember filling in multiple choice questionnaires at the time, and also afterwards one or two, and being slightly bothered I couldn't remember what I'd put last time so had no real idea of my own progress or changes in my attitudes since the last one.
I honestly don't know how many people got a second bite at the cherry. I wanted APT, Alistair Santhouse in the final meeting that I thought was a medical one and he thought was to sign me off, so was a bit muddled, suggested GET very strongly. I persisted with the practice nurse and eventually talked to a Greek named lady, who wrote the GET guide noted above (which I've since found and should scan and upload I think, I say found, no idea where it is right now but it's here somewhere) who said the APT person was off sick so she could offer GET but a very gentle not like PACE sort. but as I said above I was too scared.
Recently now I've moved to Lincs, there's lady OT from teh me/cfs unit here who does house visits. She was very firm at the first meeting she didnt' want to talk about PACE and they don't do PACE related work with patients. She's had to though, cos it's my only experience of treatment and there's a bit of overlap...
