This Lucibeee blog is well worth reading. The message is getting out.
Interesting that it is the one post on her blog she is not allowing comments on.
Which is a pity because there are a few comments that could be made in response. Such as:
substantial patient involvement and input,
Hmm.
The only thing we have to go on is the results of the 6-min walking test, at which the GET group did much better (an average 67m improvement vs 21m for CBT, 22m for SMC, and 20m for APT). However, even by the end of the trial, the mean distance achieved by those in the GET group (379m) was still below the lower limit for
healthy individuals (mean 570m [range 380-780m]).
The GET result also didn't reach clinical significance as defined by either the PACE protocol (Clinically Useful Difference), or generic standards for the 6MWT.
REF:
Minimal clinically important differences in the six-minute walk test and the incremental shuttle walking test.
All the participants were given pedometers and heart-rate monitors to assess their baseline activity, but regrettably results from them weren’t published, so we have no objective measure of daily activity or whether it improved over the course of the trial.
Should read: ...
but regrettably results from them weren’t also collected at outcome,...
Then there’s the discrepancy between these results and those reported by patients outside the context of this trial, where CBT and GET interventions receive particularly poor reception (eg,
ME Association survey). Is this because the interventions used in the PACE trial substantially differ from that experienced in the field? A
recent QJM paper indicates that this might be the case. Is this because NHS CBT/GET programmes a little overzealous in their attempts to get patients increasing their exercise levels too soon? Or is it simply the stigma of being treated by a psychiatrist for a condition that is clearly not psychiatric?
Or because it just didn't work, and may have even made patients worse, no matter how carefully it was administered?
Any therapy that cannot be delivered safely, consistently, and where it is needed, is not a useful therapy.
Furthermore, as a medico friend of mine told me years back, effective therapies for serious problems pretty much sell themselves. Always thought it an index of how dodgy and ineffective CBT & GET are that they have to be so heavily promoted and sold, to the point of becoming cult-like.
Fewer patients in the CBT and GET groups reported PEM at the end of the trial, but we don’t know exactly how it was measured.
We know how it was measured – by a single subjective self-report question. What we don't know is if that measure is reliable, meaningful, and measures what it claims to measure. (Almost certainly none of those.)
As far as I can tell from the paper itself, lots of participants
improved (including those in the SMC and APT groups), but there is no data on whether anyone actually recovered back to normal health.
But only on subjective self-report measures, and only marginally. (I think even 'modest' is too strong a descriptor to use for 15% of sod all.)
The underlying theory that unhelpful beliefs and deconditioning (possibly perceived as malingering?) perpetuate the condition is the harmful thing here.
One of the main reasons patients get angry is because even when the evidence either fails to support that theory, or sometimes completely contradicts it, somehow this is still spun as support for the theory.
Deconditioning is indisputably a critical link in the causal chain postulated by that theoretical model. But when the PACErs finally had to admit (in the
mediation paper) that deconditioning played no causal role in generating or treating the condition (in PACE, FINE, or other studies), they didn't fundamentally alter their model or therapeutic advice.
Same happened later with the null result in the 2.5 year follow-up paper. By some opaque magical thinking that became further support for CBT & GET. Which is just inexcusable, by any possible interpretation.
How polite and restrained and forgiving do we patients have to be under such repeat and blatant provocation, and recklessness with our health status? This is not a friendly difference with the neighbour about the best way to grow petunias. This has extremely serious adverse consequences for large numbers of very sick, vulnerable, innocent people.
At present, there is no one treatment that will cure those with ME/CFS, and trying to find one treatment for such a heterogeneous population is foolhardy.
Whether foolhardy or not depends on why the population is heterogenous.
Is it because of selection criteria lacking specificity (especially the Oxford and CDC Empirical)? Or is it because the disease itself has an innate hetereogeneity to it?
We don't know the answer to that yet.
The fact is that we don’t know why some treatments help some and harm others, and that is what we desperately need to find out.
We have no objective evidence that cognitive-behavioural treatments deliver genuine recoveries, or even substantial sustained improvement for a significant fraction of the ME/CFS patient population.