University of NSW tests graded activity program on mild chronic fatigue syndrome patients

by Sasha Nimmo

Australia’s University of NSW’s Psychiatry Department tested a graded activity program on 25 patients with chronic fatigue syndrome, despite the evidence of harm. Before the study, patients could complete around 4 hours of ‘moderate intensity exercise’ a week (self-reported) which is an unusually high amount for CFS patients. Exercise was not measured or recorded at the end of the program but the study claims to have found extremely small improvements in cognitive performance, with some caveats.

The Australian study ‘Neurocognitive improvements after best-practice intervention for chronic fatigue syndrome: Preliminary evidence of divergence between objective indices and subjective perceptions’ (UNSW May 16) as published in the April 2016 edition of Comprehensive Psychiatry.

It looked at subjective and objective measures on 25 patients with chronic fatigue syndrome (1994 Fukuda criteria) who completed a 12-week program (28 patients began, only 25 completed). Nine chronic fatigue syndrome patients were also on antidepressants.

  • There was no comparison group.
  • The study did not include severely ill patients.
  • The authors say it may be substantially different for patients with more severe functional impairment.

The study describes an ‘intervention’, which is a program already in place and used by the authors: “the aim of this program is to assist patients with re-conditioning, both physically and cognitively, toward normal everyday functioning”.

The paper says neurocognitive difficulties “are strongly linked to occupational and social impairment.”

“Best-practice” intervention they refer to is cognitive-behavioral/graded exercise therapy programs in this instance, despite the world’s top ME and chronic fatigue syndrome scientists describing the PACE trial of CBT/GET, which they are referring to, as having “major flaws that have raised serious concerns about the validity, reliability and integrity of the findings“.

“…cognitive-behavioral therapy (CBT) and graded exercise therapy (GET) have consistently produced moderate improvements in levels of reported fatigue as well as cognitive and social functioning in controlled trials.” (the paper provides no reference for this statement)

This paper admits that “to date reported efficacy is based entirely on subjective measures”.

“These initial data provide the first evidence of objective neurocognitive performance improvements accompanied by a significant reduction in responsiveness in stress-related neural pathways consequent to cognitive-behavioral/graded exercise therapy programs. These findings provide support for the effectiveness of such programs in remediating clinical status.”

The study used an electrocardiogram to measure heart rate of CFS patients. Breathing rate, accuracy and speed at tasks were also captured.

The study found “small, but statistically significant” improvements in neurocognitive performance. The accuracy went from 94.1% to 96.7% and speed from 2355.9 milliseconds to 2027.5 milliseconds (or 2.3559 seconds to 2.0276 seconds).

The CFS patients’ heart rates returned to baseline faster (see below).

 Screen Shot 2016-05-10 at 8.44.34 am

“It may be argued that the observed performance improvements may simply be due to the use of a repeated measures design, with previous exposure, familiarity, and reduced anxiety to neurocognitive tasks eliciting quicker responses during follow-up assessment.”

The University of NSW has come under fire for proposing to roll out a training program for medical professionals, teaching them about using CBT/GET on chronic fatigue syndrome patients. It is interesting that the UNSW believed the evidence for CBT/GET was strong enough for the UNSW Fatigue Clinic, yet this study says those therapies were unsupported for chronic fatigue syndrome by any objective evidence, until now.

This study was funded by the Mason Foundation and supported by the National Health and Medical Health Council (NHMRC). Lloyd, one of the authors of this study, has been the recipient of $1.6m in fellowship money from the NHMRC for chronic fatigue syndrome research. He is also one of the authors of the 2002 Australian guidelines for chronic fatigue syndrome, which were criticised by patient groups.

9 thoughts on “University of NSW tests graded activity program on mild chronic fatigue syndrome patients

  1. There are too many reports that GET has caused individuals harm to be ignored. People wholeheartedly did the graded exercise but found that their health deteriorated. This needs to be looked at and considered.

  2. What a DISASTER. I can’t believe in 2016 psychiatrists are still proactively trying to prove that some gentle exercise and therapy will improve and even CURE a severe neuroimmune diseasee like ME. This agenda has got to stop.: we’ve seen repeatedly it only makes patients worse.. Often in the long term. Please, please, give this money to biomedical researchers who can study this accurately and not to mental health professionals who have no business in this arm of health research.

  3. What a DISASTER. Get these mental health dudes out of the research of a severe neuroimmune disease that makes debilitating millions of once growths and functioning people . They’ve tried for 30 years time to prove that this is psychiatric, all in the head, psychosomatic.. And they’ve never come close to definitively proving what they’re after. Not yet having found a biomaterial does not mean a diseasee doesn’t exist, it means you dive in deeper. True scientists understand this. People are sick, they are suffering, they need help–physical, biomedical help–they do not need to be advised to engage in the very thing that makes then sicker. Nothing in this study is validated.. There’s no comparison group. Makes me wonder what that 1.6 million could have gone to or found if a real virologist were working on this, not a psychiatrist with a clear bias that this is some kind of psychological fad. The time of accepting that is over, and if you have ME and disagree with this kind of funding for studies, please sign this petition which asks the NIH for a drastic increase toward (legit) research for ME/CFS. #invisiblenomore

    https://www.change.org/p/increase-funding-so-we-can-find-a-cure

  4. in 30’yesrs of psychiatrists trying to shore up their biopyschosocial model, we’ve seen nothing, but junk science. First they don’t use strict diagnostic criteria for patient selection, ie the ones use by biomedical researchers. Then the y only ever look at people who whilst severely ill are actually at the very mild end of the ME//CFas spectrum.
    Objective measures of patient overall improvement are not made.
    In this test the patent s reported that they didn’t feel any better.
    The fact that the patients could perform slightly better on a nerocognative test didn’t improve their lives.
    It’s time for psychiatrists to butt out, 30 years and they’ve achieved nothing with their theories.
    Lloyd did receive over a million dollars in fellowship money, the real question is what did he actually do with this money? Where are the studies? Results?
    It has been alleged that the psychiatric school of thought heavily weighed the NHMRC pannel and stymied grant applications for biomedical research.

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