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Investigating neural mechanisms of change of cognitive behavioural therapy for CFS

Kati

Patient in training
Messages
5,497
I wish it was good news, but alas.

http://www.biomedcentral.com/content/pdf/s12888-015-0515-9.pdf

Abstract

Background: Chronic fatigue syndrome (CFS) is characterized by profound and disabling fatigue with no known somatic explanation. Cognitive behavioral therapy (CBT) has proven to be a successful intervention leading to a reduction in fatigue and disability. Based on previous neuroimaging findings, it has been suggested that central neural mechanisms may underlie CFS symptoms and play a role in the change brought on by CBT. In this randomized controlled trial we aim to further investigate the neural mechanisms that underlie fatigue in CFS and their change by CBT.

Methods/Design: We will conduct a randomized controlled trial in which we collect anatomical and functional magnetic resonance imaging (MRI) measures from female CFS patients before and after CBT (N = 60) or waiting list (N = 30) and compare these with measures from age and education matched healthy controls (N = 30). By including a large treatment group we will also be able to compare patients that benefit from CBT with those that do not. In addition, to further investigate the role of endocrine and immune biomarkers in CFS, we will determine cortisol and cytokine concentrations in blood, hair and/or saliva.

Discussion: This project creates an unique opportunity to enhance our understanding of CFS symptoms and its change by CBT in terms of neuroanatomical, neurofunctional, endocrinological and immunological mechanisms and can help to further improve future treatments strategies.

Trial registration: Dutch Trial Register #15852. Registered 9 December 2013 (http://www.trialregister.nl/trialreg/ admin/rctview.asp?TC=4311)
 

Effi

Senior Member
Messages
1,496
Location
Europe
@Kati I looked at the names on this study. The last name on the list is Hans Knoop. He works at the CFS Centre in Nijmegen (NL) and most patients on dutch speaking forums seem to have been traumatised by his approach. He is a zealous advocate for CBT and still today claimes that this is the only scientifically proven way of curing patients or at least making them a whole lot better. (Although when I read the website he's basing this statement on a study from 2001. Outdated much?) He is still convinced that it's fear of exertion that is holding us back. https://www.radboudumc.nl/Zorg/Afdelingen/nkcv/Pages/default.aspx (cfs info not available in English)

Let's find a big waste bin and dump this study in it! :whistle:
 

Kati

Patient in training
Messages
5,497
@Kati I looked at the names on this study. The last name on the list is Hans Knoop. He works at the CFS Centre in Nijmegen (NL) and most patients on dutch speaking forums seem to have been traumatised by his approach. He is a zealous advocate for CBT and still today claimes that this is the only scientifically proven way of curing patients or at least making them a whole lot better. (Although when I read the website he's basing this statement on a study from 2001. Outdated much?) He is still convinced that it's fear of exertion that is holding us back. https://www.radboudumc.nl/Zorg/Afdelingen/nkcv/Pages/default.aspx (cfs info not available in English)

Let's find a big waste bin and dump this study in it! :whistle:
Yes @Effi aweful paper, and more psycho-babble to come seemingly since they will likely publish the results. I wish patients knew not to enter this study, at all costs.

And I am posting not because I am supporting this study, I am posting it so others are aware of what is happening.
 

Effi

Senior Member
Messages
1,496
Location
Europe
And I am posting not because I am supporting this study, I am posting it so others are aware of what is happening.
Yeah I think it's really important we stay on top of the 'wrong' studies too, just to know what we're fighting!! So thank you for posting @Kati .

Just wanted to add that Hans Knoop and his 'Center of CFS Expertise' (his wording!) does not 'believe' in the term ME. 'Scientists (which ones?) aren't happy with this term either, as it stands for brain inflammation, which has never been proven.' (Japanese study begs to differ!) 'It is just the patients themselves and the patient organisations who keep on advocating for the term ME.'

It's baffling how he can still say these things TODAY. With all the latest scientific findings that have come out... I guess he didn't do his homework! I wish we could give him detention! 'Write 100 times: I will not spread lies about cfs. I will not...' lol :p
 

Kati

Patient in training
Messages
5,497
A b-cell-mediated autoimmune disease seems like a good educated guess though!

@Kati, thanks for posting. The study seems a bit desperate. (Sorry, I can't bring myself to 'like' your post, for reasons I know you understand!)


i agree with you, it seems like a last ditch effort to save the psychobabble: " Let's prove that CBT has a scientific proof" :rolleyes:. Of course they will carefully pick out their cohort, right? :ill:
 

Effi

Senior Member
Messages
1,496
Location
Europe
Of course they will carefully pick out their cohort, right? :ill:
I wouldn't be surprised if they used the broadest criteria possible, just to get a better outcome.

Mind you, that clinic also treats fatigue after cancer treatment with CBT, so I guess their only criteria is 'fatigue in any way, shape or form'. Then maybe massage the numbers a bit, and BOOM: scientific proof is born! :rolleyes:
 

Effi

Senior Member
Messages
1,496
Location
Europe
it seems like a last ditch effort to save the psychobabble
Just picturing psychobabble on life support. Doctor: 'does it have a Living Will? Where are its parents?' [psychobabblers shuffling in the background, mumbling something about not wanting to let it go] lol :p
 
Last edited:

duncan

Senior Member
Messages
2,240
Is there an assumptive close folded into that title? Isn't that the preferred gimmick of used cars salesmen?
 
Messages
15,786
It's baffling how he can still say these things TODAY. With all the latest scientific findings that have come out... I guess he didn't do his homework! I wish we could give him detention! 'Write 100 times: I will not spread lies about cfs. I will not...' lol :p
If it's not being reported in the Dutch media and didn't involve Dutch researchers, then the prevailing view is that it didn't happen.
 
Messages
13,774
Waiting list control isn't great.... but is also better than normal for these studies in CFS.

I wonder who is funding it.
 

Dolphin

Senior Member
Messages
17,567
From Twitter https://twitter.com/CoyneoftheRealm/status/616883455671074816:

In reply to this comment on the trial:
Russell Fleming ‏@Firestormmer
I think claims of efficacy have been overdone. But this RCT will be interesting I think. Was study last week showing brain changes after CBT

James C.Coyne ‏@CoyneoftheRealm 10h10 hours ago
James C.Coyne retweeted Russell Fleming

Lots of things 'change the brain' including reading this tweet. Don't be overly impressed by claims of brain changes
James Coyne is an influential psychologist (with no major connection with ME/CFS)
 
Messages
13,774
Yeah, this sort of study is unlikely to be entirely negative - two groups of people having different experiences are likely to have some different neurological responses.

PS: Hi Fire!
 
Messages
13,774
It says that they will be using actometers for this, although that's listed separately from the primary and secondary clinical measures. I wonder if they're trying to set that up as something other than an outcome measure (mediator?) in case it comes back negative again, but keeping it there in case they get a positive result this time?

If the best things about this and PACE were combined, and then results weren't spun, I think that you'd have a decent trial. The waiting list control is a bit rubbish.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
Ugh every time I read about CBT I just sigh. If researchers did trials of CBT on people with any chronic debilitating illness the results would always show some statistically significant improvement. I'm certain even with MS or Parkinson's they could show an improvement and publish this as "effective treatment".

Pick any chronic ailment and I'm sure the results would be the same. It's not a real treatment its just a therapy to help people cope with the reality of living with a chronic illness, of course it's going to improve things slightly but that's not a treatment!
 

Dolphin

Senior Member
Messages
17,567
Ugh every time I read about CBT I just sigh. If researchers did trials of CBT on people with any chronic debilitating illness the results would always show some statistically significant improvement. I'm certain even with MS or Parkinson's they could show an improvement and publish this as "effective treatment".
A trial of a similar form of CBT to the one used in King's College, London (and PACE Trial) on multiple sclerosis led to patients saying they had fatigue scores better than the scores healthy people have!

Free full text: https://www.researchgate.net/profil...is_fatigue/links/02e7e526ab2fe43ae8000000.pdf

Psychosom Med. 2008 Feb;70(2):205-13. doi: 10.1097/PSY.0b013e3181643065. Epub 2008 Feb 6.
A randomized controlled trial of cognitive behavior therapy for multiple sclerosis fatigue.
van Kessel K1, Moss-Morris R, Willoughby E, Chalder T, Johnson MH, Robinson E.
Author information

Abstract
BACKGROUND:
The purpose of this study was to assess the efficacy of cognitive behavior therapy (CBT) as a treatment for multiple sclerosis (MS) fatigue.

METHODS:
A randomized controlled design was used where 72 patients with MS fatigue were randomly assigned to eight weekly sessions of CBT or relaxation training (RT). RT was designed to control for therapist time and attention. Participants were assessed before and after treatment, and at 3 and 6 months posttreatment. The primary outcome was the Fatigue Scale. Secondary outcomes included measures of stress, mood, and fatigue-related impairment.

RESULTS:
Analysis was by intention-to-treat. A group by time interaction showed that the CBT group reported significantly greater reductions in fatigue across the 8 months compared with the RT group (p < .02). Calculated effect sizes for fatigue from baseline to the end of treatment were 3.03 [95% confidence interval, 2.22-3.68] for the CBT group and 1.83 [95% confidence interval, 1.26-2.34] for the RT group. Results also indicted that both groups showed clinically significant decreases in fatigue defined as fatigue levels equivalent or less than those reported by a non-fatigued healthy comparison group. There were no significant interactions between group and any of the secondary outcome variables, with both groups showing improvements over time on all measures.

INTERPRETATION:
Both CBT and RT appear to be clinically effective treatments for fatigue in MS patients, although the effects for CBT are greater than those for RT. Even 6 months after treatment, both treatment groups reported levels of fatigue equivalent to those of the healthy comparison group.

PMID:

18256342

[PubMed - indexed for MEDLINE]