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Controversy over exercise therapy for chronic fatigue syndrome: continuing the debate

Dolphin

Senior Member
Messages
17,567
http://apt.rcpsych.org/content/23/5/288

Round the Corner


Controversy over exercise therapy for chronic fatigue syndrome: continuing the debate
Trudie Chalder, Peter Denton White, Michael Sharpe, Alex J. Mitchell
BJPsych Advances Sep 2017, 23 (5) 288-291; DOI: 10.1192/apt.23.5.288


EDITOR’S SUMMARY
In a recent Round the Corner, Mitchell commented on a Cochrane Review of exercise therapy for chronic fatigue syndrome (CFS).

One of the trials included in that review, and discussed by Mitchell, was the PACE trial. In this month’s Round the Corner we are publishing a response we received from authors of the PACE trial (Chalder, White & Sharpe), together with Mitchell’s reply. Ed.
 
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13,774
Thanks.

That was a bit frustrating. I felt like White & co left themselves open to a strong response with their comment, which seemed less carefully phrased than their usual work. The Mitchell reply was pretty weak though. I enjoyed reading the White piece more.

edit: Actually, White was the middle author. Maybe he didn't play a leading role now he's retired, and that's why it was less good? I expect he'd still have been heavily involved though.
 

Cheshire

Senior Member
Messages
1,129
We have already pointed out that our recovery (as opposed to improvement) estimates depended on assumptions (White 2013; Sharpe 2017). The Wilshire re-analysis simply makes different assumptions, using more stringent thresholds to determine recovery.

When recovery is defined as a matter of "assumptions", you know there is a big problem.

I also like the way they imply Wilshire and al. choosed their recovery thresholds, putting under the carpet that they used their initial protocol criteria.

Mitchell says: ‘A second lesson is that clinicians and researchers should work more closely with patients...’. In fact a patient charity and a patient were involved early on in designing the trial, and were full members of our trial steering and/or trial management committees (White 2015).

Thank you so much AfME.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
When recovery is defined as a matter of "assumptions", you know there is a big problem.
If I had the assumption these investigators don't know what they are doing, where would that lead us? Assumptions are bad news in science. You always have to make some, but you consider that problematic if you are doing good science, and always want to prove or disprove assumptions.
 

Sean

Senior Member
Messages
7,378
Leaving aside the obvious rebuttal that Wilshire et al only used the protocol originally committed to (and subsequently discarded) by White et al, it is clear that some thresholds are more realistic than others, they are not completely arbitrary.

The general standard for recovery must be either the age-matched healthy population, or patients' pre-illness capacity, or some combination of those two.

A score on the 6MWT equal to Class III heart failure patients, with a maximum net gain in any arm of just 35m, after 12 months of treatment, is not healthy by any standard.

Assumptions are bad news in science. You always have to make some, but you consider that problematic if you are doing good science, and always want to prove or disprove assumptions.
Science is essentially the process of systematically identifying and eliminating assumptions (i.e. preconceptions, prejudices, biases, etc).
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Science is essentially the process of systematically identifying and eliminating assumptions (i.e. preconceptions, prejudices, biases, etc).
Yes, in part, in critical rationalism, the foundation for modern scientific philosophy. It wasn't prior to the mid twentieth century. Guess where this stuff is still sitting on the timeline? In fact I would argue they largely pursue nineteenth century scientific underpinnings for the most part. Most of the modern stuff is just window dressing. That shows when they cannot even do valid statistical analysis.
 

Mohawk1995

Senior Member
Messages
287
The real issue is that this is Psychiatrists performing research on the effects of Exercise on CFS/ME. They would be qualified to do research on how the patients feel after having gone through the program (terrible I suspect if there was honesty and integrity involved). They are not Exercise Physiologists, Kinesiologists or Physical Therapists. Not that many of these can agree on this matter either, but at least they have an understanding of what occurs in the body during exercise. Psychiatry on the other hand could only truly assess the "feeling" one gets by exercising. That is a completely incompetent manner in which to approach a disease so severe as this. They could be part of a team researching this subject, but in no way should they be the lead investigators.

As for Exercise "therapy" for CFS/ME. If you are to exert one's body in the absence of the ability of that body to produce energy, you face a vicious cycle of resource attrition predictably ending in "crashing" the system. In order for a "training response" to occur the body must have the ability to replenish the needed resources. Exercise has its place, but in the case of moderate to severe CFS/ME it is a losing proposition.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Has anyone got access to this new defence of PACE please?


Round the Corner


Controversy over exercise therapy for chronic fatigue syndrome: continuing the debate
Trudie Chalder, Peter Denton White, Michael Sharpe, Alex J. Mitchell
BJPsych Advances Sep 2017, 23 (5) 288-291; DOI: 10.1192/apt.23.5.288

EDITOR’S SUMMARY
In a recent Round the Corner, Mitchell commented on a Cochrane Review of exercise therapy for chronic fatigue syndrome (CFS). One of the trials included in that review, and discussed by Mitchell, was the PACE trial. In this month’s Round the Corner we are publishing a response we received from authors of the PACE trial (Chalder, White & Sharpe), together with Mitchell’s reply. Ed.

  • ©2017 The Royal College of Psychiatrists
View Full Text
 
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15,786
The real issue is that this is Psychiatrists performing research on the effects of Exercise on CFS/ME. They would be qualified to do research on how the patients feel after having gone through the program (terrible I suspect if there was honesty and integrity involved). They are not Exercise Physiologists, Kinesiologists or Physical Therapists. Not that many of these can agree on this matter either, but at least they have an understanding of what occurs in the body during exercise.
Agreed. The exercise physiologist at the quack fatigue center I went to was the only one who understood and respected my limitations.

But the problem is that these psychiatrists and other quacks think that there is no biomedical problem with exertion, and the ones developing GET for ME/CFS think the amount of exercise used in GET is too small to have a biomedical impact. They've stated that it's not capable of increasing physical fitness. GET was developed as a psychological therapy, intended to desensitize an assumed exercise phobia.

So GET is really just a form of CBT where you attempt to show the patient that they're not really sick instead of telling them that they're not really sick. Deconditioning is just the explanation that they made up to sell the therapy to patients, doctors, and the general public. Ergo they see no need to involve exercise therapists in a treatment which they view as being psychological. And this conveniently avoids the problem of treatments being delivered by those who might take awkward precautions, such as using a heart rate monitor.
 
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Messages
80
We suggest that the most obvious lesson from our experience of the PACE trial is that science can sometimes provide answers that are not popular with everyone:

Are they referring to how they showed that psychiatry has been doing most of the basic things wrong for an entire century and how their standard toolset doesn't do anything for most of the situations they are selling it for? Because anything else would be pretty silly at this point.
 

Solstice

Senior Member
Messages
641
a7b108e8dca865d2972094197beaa7fedadf0c15f5298fd3f4aea36d2cbf1924.jpg
 

Dolphin

Senior Member
Messages
17,567
First, Mitchell suggests that a re-analysis of some of the data related to the PACE trial found the effect sizes to be smaller than those which we originally reported (White 2011). This is incorrect. He has confused the effect size reported in the main trial paper (which was calculated using scores of the two primary outcomes) with results of a secondary analysis of the data.
Small point:
The effect sizes weren't reported in the Lancet paper at least not using the standard measures of effect size.
 

Dolphin

Senior Member
Messages
17,567
We have already explained that we simply did not have participants’ consent to release their individual patient data (White 2016). This is because the public release of data, which has now occurred as a result of an information tribunal hearing, and which Mitchell promotes in providing a link, has been explicitly proscribed by our research ethics committee. We have, however, shared data with other researchers, including a Cochrane Collaboration team, who agreed to keep the data confidential.
This makes it sound like the specific request for data by Matthees was looked at by an ethics committee and it was ruled not to be acceptable. I don't believe any evidence that occurred has been released which makes me think it never happened.
 
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