I just re-read the PACE trial authors' comment again, and I almost fell off my chair in disbelief!:
"...we believe that the patient is the best judge of how unwell they are."
What the hell is a 'false illness belief' then!!!
I can't believe that they've got the audacity to say it.
I just checked the PACE trial protocol, and the study was designed to test the hypothesis that CFS symptoms are caused/propagated by 'unhelpful illness beliefs', (aka 'false illness beliefs'):
"We do not know the mechanisms of successful treatment
for CFS/ME. Do
illness beliefs or focusing of attention on
symptoms (symptom focusing) need to be changed for
CBT to be effective? Or do CBT and GET both work by
improving tolerance to activity?"
"CBT will be based on the illness model of fear avoidance,
used in the three positive trials of CBT [18,25,26]. There
are three essential elements: (a) Assessment of
illness
beliefs and coping strategies, (b) structuring of daily rest,
sleep and activity, to establish a stable baseline of general
activities, with a graduated return to normal activity, (c)
collaborative challenging of
unhelpful beliefs about
symptoms and activity. Both therapists and participants
will receive separate manuals."
So, if the trial was designed to test a hypothesis that CFS symptoms are caused/propagated by 'unhelpful beliefs' about symptoms and activity, then surely subjective interpretations of illness need to be tested against objective measures of illness, to test the hypothesis. Otherwise you can't know if the therapies have changed the beliefs
and the actual illness/disability, or if they have changed some interpretations of the illness but without changing the actual illness or disability.
For example, if the patient 'believes' that their symptoms have improved, but you don't trust their 'beliefs', and their objectively measured outcomes haven't improved, then where does that leave the hypothesis? (Answer = it disproves it!) How have they tested their hypothesis if they haven't actually interpreted the objective outcomes?
If, when CFS/ME patients are
very ill, the patients are the "best judge of how unwell they are" (as the authors claim) then on what basis is CBT prescribed? Why are they testing the patients' illness beliefs?
References.
Comment by the PACE trial principal authors:
Professor PD White, Professor M Sharpe, Professor T Chadler.
August 2013
http://www.talkhealthpartnership.com/forum/viewtopic.php?f=451&t=4800
Published Protocol:
Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy
Peter D White, Michael C Sharpe, Trudie Chalder, Julia C DeCesare, Rebecca Walwyn and the PACE trial group
8 March 2007
BMC Neurology 2007, 7:6
doi:10.1186/1471-2377-7-6
http://www.biomedcentral.com/1471-2377/7/6