The Lancet Editorial on the PACE Trial
Reading Gijs Bleijenberg and Hans Knoop's editorial in the Lancet had one of those moment's for me where I realize that the emperor is inadequately attired. 'But you can see his .', (I'll borrow from Pratchett) - 'voonerables'.
Bleijenberg and Knoop inform readers that in the PACE Trial about 30% of participants recovered with GET or CBT. Anyone who has followed ME/CFS research for a few years could have told them that is what would happen; and would probably have told them for a fiver and saved the taxpayer £5 million.
The accumulated research and patient surveys over the years suggest somewhere around 33% each for significant improvement, little change, made worse with GET or CBT (especially if GET were approached with caution). But that's not what made me notice that the emperor's voonerables were enjoying more air-circulation than is generally thought polite.
It's when the authors start analysing, 'mechanisms of change' and differences between the therapies, and God help us - the need for 'further studies'; that I find myself wanting to look at my hands, the floor, ceiling or anywhere else to avoid feeling embarrassment on behalf of the emperor's display of voonerables.
It seems to me that Bleijenberg and Knoop have made some whopping assumptions of which they appear quite oblivious. Their tricky analysis of the 'mechanisms of change' sound beautifully embroidered (and probably expensive). Dressed in such words, it seems inconceivable that such elegant thinking will not point the way to great discoveries. I just wish it would point the way to a pair of Y-fronts.
Bleijenberg and Knoop do not seem to have considered that some people with 'fatigue' might benefit, (or even benefit greatly) from some gentle exercise and encouragement to think positively. The authors don't appear to have allowed for the possibility that if one mixes people with ME/CFS with people with depression, anxiety or other causes of 'fatigue' some, perhaps around 30%, might recover. Even some participants with severe ME/CFS might report some benefits - partly because of the therapy; but also because of the support whilst coping with such a cruel and disabling illness.
What would the authors expect if they took a mixed group of patients with fatigue and tried to treat them all with the same therapy. I think a minority might recover; and I can see two distinct possibilities why this could occur. 1, the therapies need understanding better and need more refinement - which is what Bleijenberg and Knoop seem to have assumed; and 2, The therapies only work for some of the patients because others have a disease that makes the therapy unsuitable. The Lancet editorial completely misses the latter in spite of all the scientific evidence that supports this view.
This seems obvious to me and I believe to others. But we can point and shout till our voices crack while the emperor's immodesty waves in the breeze.