Thanks
@Amused.
Can you remember anything about the long-term follow-up study? There was the main study where it were some assessments at 12 weeks, 24 weeks and 52 weeks. The last time one saw the therapist was at around 36 weeks.
However I am interested in a study they did after 52 weeks: a minimum of 2 years after starting the trial. Did they ask about hours worked at that stage? They haven't published on it but I vaguely recall seeing something which suggested they might look for this data. It is interesting if they collected the data but haven't published it.
Please keep track of what they ask you in another long-term follow-up study that they recently have got funding for. Again it will be interesting to see what data they collect compared to what they publish and.
I wish I'd paid more attention at the time now! and kept copies of stuff. But I didn't.
I was on the CBT arm. I remember at the end there was a final therapist session, and a session of signoff for the end of the Trial. This I remember vividly cos I thought it was the promised SMC that I'd never had (supposed to be given alongside) and the guy who did the signoff tried to do that and my questions about painkillers & symptom control in a physical way. But failed horribly. If only both of us had realised and instead of him trying to hlep me there and do 2 things, the medical bit had been rescheduled. But not.... There were lots of questionnaires. And a step test (where I did really badly compared to the beginning) and the mini stairs (again reduced number).
I was late onto the Trial, 2007 to 2008 by the time neurology got their ducks in a row and gave me the all clear, so I think the 2 year followup was in 2010 when I'd moved from London to Northubmerland. I remember it being one of those carbon copy type questionnaires. But nothing about it. At the time I wasn't working cos of the recession. But looking for work.
I'm very interested in being included in any followup they've got funding for - not only cos I think it's good to do, but also I've gone severe, which they said wouldn't happen if I followed the CBT Manual. I ahve followed the manual and I have gone severe! So I'd like an opportunity to slot that into their findings! My going severe thankfully doesn't appear to be the progressive sort. I appear to be rehabbing at a glacially slow pace just by wombling around the house and immediately outside it. I got a cripple chariot a fortnight ago (aka mobility scooter) and am trundling around on that a bit (at a cost) and starting to do more 'practicing' of being in the car with family driving. Taking forever with more steps backwards tahn forwards, but it is slowly slowly getting stronger. Of course my relapses happen over a period of months of thinking I'm doing ok but pushing too far then crashing. So who knows! but I digress.
I did happen to speak to one of the 3 first named researchers last week, who was very kind and helpful, and explained what data I ought to be asking for from my PACE centre. I want to use it as a benchmark to aim for, now my severe seems to have stabilised. I'm thinking of asking for the stuff we discussed in that telecon specifically, but also for everything (except the taped CBT sessions. those I never want to hear, I remember mostly wailing and crying about giving stuff up). cos it'll be useful to help me remember and useful I think for me having a framework of whatever results fall out from whatever Alem's going to be able to analyse.
Finally, as to participants being 'cherry picked'. To a certain extent there was a lot of occasions where patients wouldn't get that far to start with:
1. GP doesn't believe in ME/CFS and/or won't refer to a consultant
2. Consultant doesn't think to refer patient to the Trial.
3. Patient doesn't live close enough to be able to turn up.
4. Patient is trying to hold down a job and can't take time off or can take time off but is too knackered to work AND participate. I was very lucky I was on a 6 week contract, got ill, boss told me to reduce my hours AND find out what was wrong with me, and kept me on that contract for 2.5 years, with fewer hours but the same money. I would imagine most people in a job without a supportive boss, wouldn't ahve been able to participate. I do remember the therapist saying I was the only, or one of the few on the Trial who had carried on working. I got the feeling people had carried on with the Trial but given up work for example.
5. Patient has other things wrong with them so by the time those are fixed (with Nhs waiting lists and delays) the Trial may have been closed.
I can't remember which thread I said it on, or maybe it was on MEAction's site, but for me, they ran the bloodtests and also did MRI and various neurology stuff before I got to the CFS Unit. Then at the Unit they did psychological assessments etc and said that if they found people had other things, they'd be referred off to other depts, like mental health or erm I dunno, but say a neurology thing. So I know people are concerned (rightly) about the Oxford criteria being used, but within the context of the NHS conveyor belt system of dealing with issues then passing you onto the next dept for the next issues and the 'hurdles' one had to clear to get to be considered for the Trial, at least at the hospital I was at, I'm pretty sure the people who participated weren't just a 'little bit tired for a week' or had other obvious issues that would explain it. Obviously I have no idea about other centres, and also I only saw a few other patient type people who did look bloody ill and knackered! even though there was parking close to the building and a lift and not enormously long corridors to get to reception.
Sorry I'm so fluffy on the details, I thought I'd be on the Trial, fixed and it would help others. I didn't realise it would be so important a decade later!