• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Coyne's new blog on the flaws of the Dutch research into 'ME' and their version of CBT

Countrygirl

Senior Member
Messages
5,429
Location
UK
This blog by Professor James Coyne is an important one as he writes a critical analysis of the Dutch papers on ME and CBT (in reality CF and their version of CBT).

When Esther Crawley presents lectures, she informs the audience that the Dutch studies are the foundation (my word, not her's) upon which her 'research' is based. A year ago, I waded through their papers and it was clear that they were riddled with fundamental flaws. Destroy the Dutch claims; destroy Crawley's.........neither are studyinng ME, but chronic fatigue..............unrelated to ME.

Coyne has produced a sueful resource for us here.


https://www.coyneoftherealm.com/blogs/mind-the-brain/when-psychotherapy-trials-have-multiple-flaws

Spoiler alert
This is a long read blog post. I will offer a summary for those who don’t want to read through it, but who still want the gist of what I will be saying. However, as always, I encourage readers to be skeptical of what I say and to look to my evidence and arguments and decide for themselves.

Authors of this trial stacked the deck to demonstrate that their treatment is effective. They are striving to support the extraordinary claim that group cognitive behavior therapy fosters not only better adaptation, but actually recovery from what is internationally considered a physical condition.

There are some obvious features of the study that contribute to the likelihood of a positive effect, but these features need to be considered collectively, in combination, to appreciate the strength of this effort to guarantee positive results.

This study represents the perfect storm of design features that operate synergistically:

perfect-storm.jpg


Referral bias – Trial conducted in a single specialized treatment setting known for advocating psychological factors maintaining physical illness.

Strong self-selection bias of a minority of patients enrolling in the trial seeking a treatment they otherwise cannot get.

Broad, overinclusive diagnostic criteria for entry into the trial.

Active treatment condition carry strong message how patients should respond to outcome assessment with improvement.

An unblinded trial with a waitlist control lacking the nonspecific elements (placebo) that confound the active treatment.

Subjective self-report outcomes.

Specifying a clinically significant improvement that required only that a primary outcome be less than needed for entry into the trial

Deliberate exclusion of relevant objective outcomes.

Avoidance of any recording of negative effects.

Significantly:

So, outcomes were assessed for the intervention group shortly after completion of therapy, when nonspecific (placebo) effects would be stronger, but a mean of six months later than for patients assigned to the control condition.

We cannot let these the authors of this trial off the hook in their dependence on subjective self-report outcomes. They are instructing patients that recovery is the goal, which implies that it is an attainable goal. We can reasonably be skeptical about acclaim of recovery based on changes in self-report measures. Were the patients actually able to exercise? What was their exercise capacity, as objectively measured? Did they return to work?

These authors have included such objective measurements in past studies, but not included them as primary outcomes, nor, even in some cases, reported them in the main paper reporting the trial.

Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med. 2010 Jan 5:1

The senior authors’ review fails to mention their three studies using actigraphy that did not find effects for CBT. I am unaware of any studies that did find enduring effects.

Perhaps this is what they mean when they say the protocol has been developed over time – they removed what they found to be threats to the findings that they wanted to claim.