(Not following this thread/study closely, so only an ignorant opinion here but):
As OB mentioned, the emphasis on views of recovery in the CBT manual make it difficult to know what these words should be taken to represent, but still, 39% self rating as completely recovered would indicate a significant rate of real recovery to me. I don't know what the natural rate of recovery is for patients like those studied is though, and as much of the control group in this study was going through face to face CBT/GET, it's difficult to know if that's a useful comparison. (I really don't know much at all about those children and adolescents being diagnosed with CFS, other than that the prognosis is generally better).
Self-rated as 'completely recovered' is a pretty good measure of recovery for CFS imo, even if there are the usual problems with response bias etc.
I tend to agree that there is something going on here. Continuous measures, below, also indicate decent responses:
| Attend | Function | Fatigue | Energy |
---|
'Healthy' population | 98% | 95 | 30 | 54 |
| | | | |
Baseline | | | | |
FITNET | 39.5% | 60.7 | 51.2 | 10.0 |
Usual Care | 45.1% | 56.8 | 51.6 | 9.2 |
| | | | |
Post-treatment | | | | |
FITNET | | | | |
Usual care | 51.7% | 70.0 | 42.3 | 28.5 |
| | | | |
[td]84.3%[/td][td]88.5[/td][td]24.0[/td][td]66.7[/td] Sure, the authors shamelessly Gerrymandered the outcomes to give rather implausible recovery rates but dig beneath that and there does seem to be some real improvement.
Caveats (of course)
1. CBT for CFS generally encourages patients to pay less attention to fatigue, but that applies to controls too. And that wouldn't affect physical function reporting to the same degree.
2. Some of the gain in school attendance may be down to displacement of home/leisure activity and there's some evidence that may have happened (see earlier posts on A/F ratio), but that can't explain all of the difference. Also, school attendance is likely to be a primary goal of both rehabilitation and CBT in the control group as these are school-age children.
3. What may be more significant is the involvement of both parents and a school mentor who may be providing additional encouragement to attend, and, I think, are responsible for 'checking' the self-rated attendance.
4. The presence at school may not be very productive i.e. just sitting there to be seen to be attending - but then the fatigue levels are really quite low too.
5. Half the FINET group had only been ill for 14 months or less so a good recovery rate would be expected - but not 37% in 6 months, and half the controls had only been ill for 16 months or less.
I'm sure these caveats can explain some of the difference between controls and FINET, but not all of it.
The control group is interesting as it's 'real world', regular-clinic-not-research-trial therapy and the results are pretty awful. Which doesn't say much for the current system in Holland (which I gather is predominantly CBT).
It may be that the exact nature of the internet therapy is more important than the CBT element itself. But I think it's worth trying to understand what these results really mean.