Gebruik makend van de gegevens uit de PACE-trial studies en het oorspronkelijke protocol,
onderbouwt Mark Vink in een uitgebreide review de stellingname:
- dat de studie zeker geen patiënten met CVS, laat staan ME, betreft,
- dat er in subjectieve termen, zoals vermoeidheid, geen meerwaarde voor CGT en GET is,
- dat er in objectieve maatstaven, bijvoorbeeld conditie, helemaal niets veranderde,
- dat er vraagtekens gezet mogen worden bij de gesuggereerde
"veiligheid" van CGT en GET, en
- dat het fundament onder het luchtkasteel (bewegingsangst,
deconditionering. etc.) ontbreekt.
Een soortgelijke boodschap, maar dan samengevat, kunt u hier en
hier vinden.
Voor een gedetailleerde onderbouwing lees de uitgebreide studie van Mark:klik hier.
The PACE trial invalidates the use of cognitive behavioral and graded exercise therapy
in Myalgic Encephalomyelitis/chronic fatigue syndrome: A review.
J Neurol Neurobiol 2(3): doi 10.16966/2379-7150.124.
Vink M.
Abstract
The main findings reported in the PACE trial were that
cognitive behavioral therapy (CBT) and graded exercise therapy (GET)
were moderately effective treatments
for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and
fear avoidance beliefs constituted the strongest mediator of both therapies.
These findings have been challenged by patients and, more recently, a number of top scientists,
after public health expert Tuller, highlighted methodological problems in the trial.
As a doctor who has been bedridden with severe ME for a long period,
I analysed the PACE trial and its follow-up articles from the perspectives of a doctor and a patient.
During the PACE trial
the eligibility criteria, both subjective primary outcomes,
and most of the recovery criteria were altered,
creating an overlap of the eligibility and recovery criteria;
consequently,
13% of patients were considered "recovered," with respect to 1 or 2 primary outcomes,
as soon as they entered the trial.
In addition,
46% of patients reported an increase in ME/CFS symptoms,
31% reported musculoskeletal and
19% reported neurological adverse events.
Therefore
the proportion negatively affected by CBT and GET would be between 46% and 96%,
most likely estimated at 74%, as shown in a large survey recently conducted by the ME Association.
Medication with such high rates of adverse events would be withdrawn with immediate effect.
There was no difference in long-term outcomes
between adaptive pacing therapy, CBT, GET and specialist medical care, and
none of them were effective,
invalidating the biopsychosocial model and use of CBT and GET for ME/CFS.
The discovery that an increase in exercise tolerance did not lead to an increase in fitness
means that an underlying physical problem prevented this;
validates that ME/CFS is a physical disease and
that none of the treatments studied addressed this issue.
Keywords:
Chronic Fatigue Syndrome; CBT; Cognitive Behavioral Therapy; GET;
Graded Exercise Therapy; Myalgic Encephalomyelitis; PACE Trial; Pacing
https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-2-124/JNNB-2-124.pdf
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