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PACE Trial and PACE Trial Protocol

D

Dolphin

Senior Member
Messages
17,567
@maxwhd on Twitter posted this: https://twitter.com/maxwhd/status/573608882129477632
Chalder self-serving misleading claims & "landmark PACE trial" #KCL #mecfs #badscience #IOPPN http://issuu.com/kingscollegelondon/docs/making_a_difference_institute_of_ps/21?e=1117294/10608236
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B_XePQ3WYAECBf-.jpg
 
biophile

biophile

Places I'd rather be.
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8,977
Dolphin posted an image above and I typed it out so that it can be quoted elsewhere.

http://issuu.com/kingscollegelondon/docs/making_a_difference_institute_of_ps

Making a difference | Institute of Psychiatry, Psychology & Neuroscience

World-leading research from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London has made, and continues to make, an impact on how we understand, prevent and treat mental illness and other conditions that affect the brain.

#22: CBT FOR CHRONIC FATIGUE SYNDROME

Chronic fatigue syndrome (CFS) affects approximately 250,000 people in the UK. The profound and disabling exhaustion isn't alleviated by rest, and other symptoms can incude joint and muscle pain, headaches, disturbed sleep and short-term memory problems.

People might initially develop the fatigue as a result of an illness, such as a virus, or after a period of stress. But once triggered, the fatigue is maintained by other factors, including some coping styles.

When we first piloted cognitive behaviour therapy (CBT) for CFS in 1991 there were no established treatments for CFS.

CBT for CFS encourages people to gradually build up and resume regular daily activities; to identify and plan how to deal with triggers that might make symptoms worse; and to learn how to manage and reduce the symptoms.

We developed a version of the specialised therapy for young people that involves the whole family. Family-based CBT is routinely offered to 11 to 18-year-olds diagnosed with CFS. For them, the consequences of CFS are dire, impacting on education, and physical and social development as a result of long periods out of school.

The choice between rest and activity as a treatment for CFS has often been at the core of a controversial debate. Our researchers were involved in the landmark PACE trial which showed that CBT and Graded Exercise Therapy (GET, also recommended by NICE) for CFS were more effective and more cost-effective than adaptive pacing therapy - where people balance rest with activity - or specialist medical treatment.

One year after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.

Professor Trudie Chalder
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I was going to also post a more accurate version for contrast but I couldn't be bothered.

A few points though:

CBT/GET are not "treatments"; these therapies do not tackle the underlying pathophysiology. The published evidence disputes the allusion that patients are gradually building up and resuming regular daily activities. The PACE Trial was highly controversial, non-blinded (active therapy groups were told how positively effective the therapies were), and only showed modest self-reported benefits for a small minority of participants. It used a diagnostic criteria of chronic fatigue only, did not use any other CFS or ME criteria properly. APT is not pacing as practiced by others. The claim that "a fifth of people had recovered and were able to partake in life without significant fatigue" is fictitious. Etc.
 
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Graham

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
"One year after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue"
Wouldn't it be great if that were true.
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Of course it could be that we are reading it wrongly, and that after the course of therapy, everyone's left arm and shoulder was able to enjoy a full life, which would constitute roughly a fifth of each person. The rest of each person, of course, remained shattered. CB[1] is what your right arm's for, so perhaps CBT is for your left arm.

[1] Courage Beer
 
Graham

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Or "Wessely and White SEID it's bad!"

I came across this FOI again about why the Dept of Work and Pensions funded the PACE trial: I had forgotten all about it, but in the light of recent benefit statements, I thought it was interesting:

The funding was agreed by a previous Departmental Chief Medical Adviser, who supported PACE due to his combined expertise and academic interest in this area of work. In his role as Chief Medical Adviser he felt it reasonable to support this trial, particularly as when the trial was initially being developed, consideration was given to exploring the use of a five point measure of work and social adjustment, which would look at employment and social outcomes for people taking part in the trial. Additionally, one of the secondary measures considered as part of the trial, was the impact that the trial would have on ability for employment and study. We believe that the findings of the trial will contribute to the continuingly growing evidence base, which informs the development of health and work related policy, policy based on the large body of evidence showing that work is good for physical and mental wellbeing and that being out of work can lead to poor health and other negative outcomes.

www.whatdotheyknow.com/request/part_funding_of_the_pace_trial_b

It's being out of work that has caused my ME! If only I'd known, I would have carried on working. Hmmm!!!!
 
GracieJ

GracieJ

Senior Member
Messages
773
Location
Utah
Hmm. Wonder what would have to be said about the other 80%. Just cannot imagine. So conveniently left off.
 
D

Dolphin

Senior Member
Messages
17,567
Just got the following e-mail:


New updates for the request 'Timing of changes to PACE Trial recovery criteria'

===============================================================================


Mr Matthees added an annotation (10 April 2015)

"In response to QMUL's refusal to grant this FOI request after an internal review, I submitted a complaint to the ICO. I sent the correspondence from th..."

https://www.whatdotheyknow.com/request/timing_of_changes_to_pace_trial#comment-59096
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Mr Matthees left an annotation (10 April 2015)
In response to QMUL's refusal to grant this FOI request after an internal review, I submitted a complaint to the ICO. I sent the correspondence from the whatdotheyknow.com thread and the following supporting document, which is similar to what was posted there, but for completeness I have placed it online for others to view:

https://sites.google.com/site/pacefoir/FOIR2_online-correspondence.pdf

https://sites.google.com/site/pacefoir/FOIR2_supporting-document.pdf

Unfortunately, QMUL managed to persuade the ICO case worker to rule that this request was "vexatious":

https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf

I did not expect such difficulty getting simple answers about a publicly funded clinical trial. Due to health-related limitations and other commitments, I doubt that I can sustain the time and effort required to pursue this particular case further myself. The public should not have to depend on a First-tier Tribunal just for a chance at getting clarification about trial methodology.

The disappointing ICO decision notice was emailed to me on the 18th March 2015. I have since written the following response for the record, addressing the main assertions and conclusions in the decision notice (which in my opinion were based on misguided assumptions and an imbalanced consideration of the evidence).

https://sites.google.com/site/pacefoir/FOIR2_response-to-ICO-decision-notice.pdf
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