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CBT and CFS - Editorial by Fred Friedberg (July 2016)

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I didn't think that this did a good job of exploring the issues, even though it's always good to see criticism of PACE's spin on recovery
Ditto.

Patients do accept that they have "a serious, chronic, and systemic disease that frequently and dramatically limits the activities of affected patients". They just don't think that a psychologist is able to help with that.
Eventually. At first they typically start the search for a rapid fix or recovery. Its hard to come to grips with a low chance of recovery.

In his article he does include many of the criticisms of CBT and PACE that we know, but they are expressed in a milder, possible what might be thought of as a more professional or academic, language .
The inappropriate calculation of SD on the wrong population group leading to an SF36PF "normal value" should have been mentioned. Its a major flaw in their claim to recovery, and maybe worse.

I have no problem with CBT as a tool for improving patient capacity to manage illness, should the patient be willing and able to participate. However the "CBT" used in PACE, for example, is very different with the same name.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
To me Freidberg seems like someone who is really trying to move psychological approaches to CFS in a more helpful (less damaging?) direction, but he doesn't really want to attack the dodgy foundations that underpin a lot of work on behavioral interventions.
That was my take on it too.

PS He might actually have done so and got advised to revise certain points by reviewers etc. We cannot presume this is the original form of the paper. Its hard to get damning criticism published.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
I've just skimmed through it again and, to be fair, there is some decent stuff in it, such as the quotes below...
Overall it's not worded as strongly as I would like, and the over-inflation of the PACE results is irritating.
Friedberg said:
Yet CBT studies in CFS have not confirmed the hypothesis that somatic attributions predict poor outcomes.[6] In one of the first published controlled CBT trials in CFS, it was concluded that: ‘Physical illness attributions were widespread, did not change with treatment, and were not associated with poor outcome in either the cognitive-behavior therapy group or the control group.’[7, p. 77] However, the implicit message to patients continues to be that attributing the illness to a physical cause is an error that needs to be corrected.
Friedberg said:
However, one may view the etiology of CFS, if the data do not support the utility of trying to convince patients they are not physically ill, then it would seem to be counterproductive to take such an approach.
Friedberg said:
Furthermore, a number of patient surveys have documented negative effects of a CBT-type approach. A recent review [9] of eight surveys of CFS patient samples (Ntotal = 6146) found high percentages (roughly 50%) of adverse reactions, relapses, and illness worsening as a result of patient-initiated or practitioner-prescribed graded activities similar to presumably therapeutic behavioral techniques. Thus, there is a considerable gap between successful CBT research trials and patients’ real-life experiences using CBT techniques either self-initiated or prescribed by a practitioner.
Friedberg said:
Of the three successful CBT trials that utilized more objective actigraphy-based physical activity outcomes,[17] none found improvements in actigraphy from pre- to post-treatment or between intervention and control groups.
Friedberg said:
According to a recent qualitative study [20] carried out with 19 CFS patients, factors that influence whether or not a patient engages with a behavioral intervention for CFS are: ensuring that the patient feels ‘accepted and believed’; that the patient accepts the diagnosis; and that the model of treatment offered matches the model of illness held by the patient. This is the kind of thoughtful, data-based approach that should be considered when educating practitioners about how to help the CFS patient.
 

Kati

Patient in training
Messages
5,497
I don't think anyone can justifiably say this was a bad paper, only that it could have been better.

Doctors need to take a stand against poor medical standards, including research, or ... exactly when will these problems ever get resolved?

For me, there will not be any resolution until there is finding of cause and treatments, medical treatments that is, access to diagnostics which will help in competent diagnosis, and treatments of people of our kind.

I do not want my feelings or my behaviors to be taken care of. I do not want health care professionals to address deconditioning. I want medical treatments for my disease.

Considering the history of our disease from the last 3 decades, any amount of funding spent for behavioral therapy is too much money spent.

And when I say that, there are always a few that will answer and say that CBT saved their lives, or saved their marriage, or helped them managed their illness. Good for you that you found help. But for each person helped, there are 9 people harmed or mishandled. Consider that behavioral treatment is cheaper than drug treatments and that socialized medicine is more inclined in saving money wherever they can.

It is time that ME gets biomedical research, access to treatments which gives them a chance to greater functioning and perhaps even better.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
For me, there will not be any resolution until there is finding of cause and treatments, medical treatments that is, access to diagnostics which will help in competent diagnosis, and treatments of people of our kind.
Eventually, for ME or any specific disease. However these problems are much more widespread than just ME, and any biomedical research funding, or the rollout of diagnostics or treatments, are going to take longer if the fundamental issues of poor science are ignored.

Even with all that though, proponents of these kinds of theories still argue, decades later, that they are at least partially psychogenic. Look at MS for example, its still considered psychogenic by some psychiatrists. Do we have to wait for poor theories to die off because the doctors who promote them retire? It looks like it might be the case, but it does not have to be.

There has been advancing of ideas that physical illness and psychogenic illness go hand in hand, leading to dual diagnoses. This will continue to plague us, as a community, till long after most of us died unless medicine starts addressing the fundamental issues that allow such poor research to continue, or be accepted, or make claims like "evidence" based results.
 

aaron_c

Senior Member
Messages
691
It is slightly heartening that a CBT practitioner is trying to distance himself from GET and the whole psychosomatic view. Maybe they are starting to wonder if that ship is sinking?

In the end he seems to say "this research was was seriously flawed, but we can still use some of it if we squint." The part that he wants to use:
Of the three successful CBT trials that utilized more objective actigraphy-based physical activity outcomes,[17] none found improvements in actigraphy from pre- to post-treatment or between intervention and control groups.

So in the better studies they found no objective proof that the therapy worked but some of the patients reported feeling slightly better. Why the disparity?
One plausible interpretation of this finding is that ‘recovered’ individuals may have replaced illness-exacerbating activities with illness-moderating behaviors, resulting in no net increase in total activity levels.

Ya, that and response bias. (The article he cites is a reanalysis of three studies--but it doesn't mention which they are in the abstract, which is all I can get to. Does anyone know if the three studies avoided response bias?)

I recognize that he seems to be a good person trying to be a sort of peacemaker...and I do think that large parts of the article cover important points. But he never seriously considers the possibility that CBT doesn't do much for us beyond the human contact. It seems like because he personally believes in it, he finds CBT innocent until proven worthless. I wish I could see the "good" studies he cites, because I wonder if they use follow-up studies to check if there was any long-term gain, and I wonder if they use control groups where the participants spoke to someone who just listened.

And like many people here, I wonder if he sees false illness beliefs as at least 25% of every organic disorder.

Sigh. Why can't they leave us alone and go help people who want it?
 

PennyIA

Senior Member
Messages
728
Location
Iowa
Just chiming in... when I went to 'pain rehabilitation clinic' at Mayo - the terms CBT & GET were not used within patient earshot. But that's what the treatment was. AND it was before I'd heard that GET is NOT what you should do....

And, it still didn't help anything in the long run. Changing the name within earshot of the patient doesn't make it more effective... it just takes longer for the patient to give you the feedback that it didn't (or won't) work.

Agreed that CBT for 'managing' while ill was somewhat useful for me. Didn't fix me... but helped me 'cope' and manage my illness just a tiny bit better.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Review by Vink clearly showed that The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome doi http://dx.doi.org/10.16966/2379-7150.124
We knew this evidence and argument last year, but its nice to see it formally published. Even if you do not accept that PACE is seriously flawed, you are forced to conclude that CBT/GET does not work, and that ME is physical. However the layers and layers of fallacies and flawed methodology and misleading rhetoric tell an even more sinister story.
 

Esther12

Senior Member
Messages
13,774

roller

wiggle jiggle
Messages
775
There is a clear and obvious difference between 'coping' CBT and "'curing'" CBT and this is the first thing that should be addressed in any attempt to assess the use of CBT in ME and CFS.

i agree.
cbt (+ similars) are helpful if its not possible to restore physical/mental abilities otherwise.

its like giving a paralysed person a wheelchair. sure, it helps and improves life.
 

Esther12

Senior Member
Messages
13,774
many of the issues reported were incorrect though ...

Really? Which were they?

PS: Sorry if "maybe worth checking out the details for yourself before citing it" sounded like I was saying YOU need to check details before citing the paper, I just meant that generally 'one' should. Casual grammer may have made it sound a bit rude.