horse with, so it will run. Response to The Lancet editorial of 18
The modest and oversold results of the PACE study demand that the
physical abnormalities of ME/CFS be urgently confronted by the medical
establishment.Even the loosely defined, highly selected, less
debilitated sample of participants reached their limits following the
"star" CBT and GET interventions.
People with properly defined ME/CFS with characteristic post-exertional
malaise and lower tolerance of exercise would have sent improvement
scores crashing and drop-out rates soaring. Such people were excluded
and would have in any case refused to take part in PACE.
For me, a severely disabled sufferer, a few extra metres of walking
triggers a bewildering array of symptoms, the third day of such exertion
being the worst and needing about six days for any improvement. I wish I
was just fatigued! GET treatment is not safe for us and must not be
recklessly forced on us.
The word "recovery" has been given an abstract statistical definition
and gives the media licence to make further exaggerations. There is no
report of how many people who could not previously work returned to
work, for example.
Dr Bleijenberg casts a euphoric glow over the results. His speculation
about supposed CBT-related mechanisms of change sound to sufferers as
appropriate as saying: "All we need is a better whip to flog a dead
horse with, so it will run."
It is time The Lancet regularly published and encouraged scientific
research on the many serious physical abnormalities in this maligned
illness. That would help patients.