• 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.

CBT in the treatment of CFS: A narrative review on efficacy and informed consent

Dolphin

Senior Member
Messages
17,567
Source: Journal of Health Psychology

Date: September 15, 2016

URL: https://goo.gl/MNjq2y i.e.

http://m.hpq.sagepub.com/content/early/2016/09/14/1359105316667798.abstract



Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent

-----------------------------------------------------------------

Keith J Geraghty(1,*), Charlotte Blease(2)

1 University of Manchester, Oxford Road, Manchester M13 9PL, UK

2 University of Leeds, UK

* Corresponding author. Email: keith.geraghty@manchester.ac.uk



Abstract


Cognitive behavioural therapy is increasingly promoted as a treatment for chronic fatigue syndrome.

There is limited research on informed consent using cognitive behavioural therapy in chronic fatigue syndrome.

We undertook a narrative review to explore efficacy and to identify the salient information that should be disclosed to patients.

We found a complex theoretical model underlying the rationale for psychotherapy in chronic fatigue syndrome.

Cognitive behavioural therapy may bring about changes in self-reported fatigue for some patients in the short term, however there is a lack of evidence for long-term benefit or for improving physical function and cognitive behavioural therapy may cause distress if inappropriately prescribed.

Therapist effects and placebo effects are important outcome factors.


Keywords: chronic fatigue syndrome, cognitive behaviour therapy, information, informed consent, treatment


--------

(c) 2016 SAGE Publications
 

medfeb

Senior Member
Messages
491
Great paper. Lots of useful information and perspectives pulled together in one place. It highlights the problems with the evidence for and use of CBT in CFS. The one comment I'd add is the AHRQ Addendum finding that even that weak evidence virtually disappears if you exclude Oxford studies. Its remarkable how many different ways they "cooked the books" - patient selection, analysis methods, outcome measures, etc - to get the effect they wanted to see.
 
Messages
2,087
I can't access this paper but have a general CBT evidence query.
Are all CBT trials as weak as PACE. I don't mean all the technical issues with PACE, I mean the lack of blinding, subjective outcomes and no proper control?
At what point does evidence get classified as weak over no evidence?
If a trial is fundamentally flawed to begin with can any conclusion be drawn , why would some evidence be classified as weak as opposed to not meeting required basic standards of clinical trial evidence?
Tks for any feedback.
 
Messages
13,774
I can't access this paper but have a general CBT evidence query.
Are all CBT trials as weak as PACE. I don't mean all the technical issues with PACE, I mean the lack of blinding, subjective outcomes and no proper control?
At what point does evidence get classified as weak over no evidence?
If a trial is fundamentally flawed to begin with can any conclusion be drawn , why would some evidence be classified as weak as opposed to not meeting required basic standards of clinical trial evidence?
Tks for any feedback.

Some CBT trials for eating disorders use weight as an outcome. Some psychosis trials use blinded assessment of symptoms (and these blinded trials report much worse results).

Compared to other CFS CBT trials PACE is actually pretty good.
 
Messages
15,786
Are all CBT trials as weak as PACE. I don't mean all the technical issues with PACE, I mean the lack of blinding, subjective outcomes and no proper control?
I've looked at some of the CFS papers used for NICE, and they're even weaker than PACE. Small, subjective outcomes, poor definitions, dodgy cohorts, no blinding, often no control group, etc.

Some use objective secondary outcomes (VO2max, actometers), but either show 1) no improvement or 2) patients were normal to start with. Long term followups have the same problem as PACE, generally, with no sustained improvement and deliberate administration of different therapies to render the results meaningless.

Of course, it's pretty much all the same people doing these studies, so the same flaws keep showing up.
 
Messages
15,786
Poor choice of words. The bar was set so low that they couldn't have failed. That is unacceptable regardless of how much worse other studies are.
Yes, but the thresholds had to be lowered to get the same good results they got from the even crappier studies. If PACE had stuck to the protocol, it would have been decent. That's why CBT and GET came out looking so bad, based on protocol-defined analyses.
 
Messages
2,087
Compared to other CFS CBT trials PACE is actually pretty good.

Thanks for all the feedback.

So, if PACE is a 'good' example of a CFS CBT trial, I would be inclined to think they are all worthless based on my knowledge of PACE.
So I am still wondering then, why is the evidence classified as weak as opposed to none.
Wouldn't the easiest way to debunk CBT for CFS just be to throw out any trial without blinding that has only subjective measures no proper control and no long term follow up?

In other words apply the same standard as we would for any treatment for other diseases.

The reason I bring this up is the mantra that NICE wasn't based on PACE but so what if the other trials don't meet basic scientific clinical trial criteria. Surely it's a slam dunk.
Why are lower levels of acceptance OK for CBT ?
 
Messages
2,087
My guess would be that it largely depends on who is involved in the NICE process for ME/CFS, and who is doing the actual trial evaluations.
Yes that's more than likely. Surely one (good?) way to advocate then is simply to ask for the same standards to be applied for ME as for prescribed treatments in other illnesses.
The notion that there is weak evidence for CBT is nonsense to me if it based on flawed trials.
 
Messages
15,786
The notion that there is weak evidence for CBT is nonsense to me if it based on flawed trials.
I think there's an even simpler and more obvious problem: the Oxford criteria used in most of those trials does not reflect the diagnostic criteria used by NICE. How can NICE describe the disease one way, while relying on evidence from trials where the recruitment criteria are extremely different?
 

A.B.

Senior Member
Messages
3,780
Patients should demand some control over the national research strategy for the illness, and once some power has been obtained, they should implement a series of rules that enforce high standards in research.

We're fed up with exploitative junk science being forced on us. This research is supposed to help us.
 
Messages
2,087
I think there's an even simpler and more obvious problem: the Oxford criteria used in most of those trials does not reflect the diagnostic criteria used by NICE. How can NICE describe the disease one way, while relying on evidence from trials where the recruitment criteria are extremely different?
Yes good point.

I just spotted this tweet by @Keith Geraghty , he calls CBT useless, wonder why he couldn't or didn't use similar language in the Paper?

 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Patients should demand some control over the national research strategy for the illness, and once some power has been obtained, they should implement a series of rules that enforce high standards in research.

We're fed up with exploitative junk science being forced on us. This research is supposed to help us.

Yes, the quality of ME and CFS research is abysmal, with relatively few exceptions. I wonder if IACFSME or some other good organisation could maintain a database of published papers where it classifies the study, grades it on quality and notes some key things such as has the study been replicated? what criteria did it use for participant selection?

Would that be too big a job to fund? Once there is a system and a coordinator/final arbiter, much of the work could probably done by volunteers.

The database and updates would be a useful resource for researchers and government health institutions. Grading could create a powerful way to encourage improvements.
 
Messages
2,087
Yes, the quality of ME and CFS research is abysmal, with relatively few exceptions. I wonder if IACFSME or some other good organisation could maintain a database of published papers where it classifies the study, grades it on quality and notes some key things such as has the study been replicated? what criteria did it use for participant selection?

Just a comment,
Ron Davis said he reviewed over a thousand ME CFS papers if I remember correctly, and he wasn't too impressed. I have a feeling that the papers that come out in the next 5 -10 Years will overshadow anything that has gone before. At least I hope so.
 

Large Donner

Senior Member
Messages
866
Henrik Vogt @HenrikVogt
@HylomantisL @julierehmeyer @Neuro_Skeptic @keithgeraghtyReally? If you apply CBT to e.g HIV , would you expect that to worsen the disease?

Take the actual treatments away and tell them AIDS is just a behavioral disorder and they are not ill and convince them to do more than they can then of course it f****** would!!!!

How about telling AIDS patients via CBT to encounter more viruses, or diabetics to encounter more sugar, (in the same way CBT in ME is used to tell people to encounter more exertion) and tell me it doesn't cause harm and exacerbate the disease..

The man is such a dummy!