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A Response to Professor Fred Friedberg’s Editorial about CBT

alex3619

Senior Member
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13,810
Location
Logan, Queensland, Australia
Here is the thing. We have no issue with CBT, we have an issue with CBT2. We have no issue with pacing, we have an issue with pacing2. We want recovery, not recovery2. About the only thing that is abundantly clear is that we don't want graded exercise, though many of us are fine with being active up to our limit.

What a lot of people, including doctors, and maybe especially doctors, do not realize is that the different uses of the terms have vastly different application and meaning.

Pacing was not tested in the PACE trial, they tested adaptive pacing, a treatment methodology invented for the PACE trial and used nowhere else.

When a drug company does this with using poor comparison choices or very poor treatment protocols it seems more clear that its a faulty and even deliberately biased study. When this happens in psychiatry nobody seems to care. Which directly implies that, for all the issues that exist with drug companies biasing research, it seems that psychiatry is worse.

CBT used in PACE does not resemble CBT used in support for people with other illnesses.

The kind of recovery claimed in PACE is so poor it would probably make me suicidally depressed. Maybe I am just hard to please, but I need hope for recovery, not pretend recovery.

Normal is not normal either.

These people love using overloaded claims and terms. They use highly technical definitions of common terms that are understood differently by most. They then fail to correct misunderstandings, and use the terminology in ways that foster misunderstanding.
 
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Professor Fred Friedberg seems unable to grasp that the CFS community objects to being told CBT will cure their problem. How can he not see that?

Edit: The above was incorrect. See posts #7 and #10 of this thread.
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
10/10 to Professor Malcolm Hooper for that letter.
....

Professor Fred Friedberg asks why cognitive behavioural therapy (CBT) is so vilified in the chronic fatigue syndrome community. He opens his Editorial by stating: “Cognitive behaviour therapy (CBT) is a well-established psychosocial intervention for psychiatric disorders, pain management and stress related to medical conditions”

Unlike CBT used in some other conditions, in ME/CFS it has been used in abusive ways eg getting patients to change their behaviour and push themselves in ways which end up worsening their illness and actually harming them.
 

JaimeS

Senior Member
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3,408
Location
Silicon Valley, CA
Friedberg's entire point was that ME patients were being reasonable by rejecting 'CBT2' and that CBT as he practices it -- for helping people cope with long-term illness -- was getting a bad name because of their widely-publicized (crappy!) research. It was an attempt to separate himself from the UK psychobabblers, so far as I could tell. Here are some excerpts:

A number of psychological studies have examined the role of illness beliefs as a potential persistence factor in prolonged fatigue states, including CFS. Certain beliefs have been postulated to predict poor outcomes, in particular ascribing the illness to a physical or somatic cause (given the lack of consistent medical findings or an objective test for diagnosis). Yet CBT studies in CFS have not confirmed the hypothesis that somatic attributions predict poor outcomes. 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.’ 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.

Boldfaced mine.

As a result, patients may believe that practitioners of CBT will try to convince them that their personal beliefs maintain their illness and minimize any role for (a more legitimizing) biomedical pathology. 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.

So basically he says "beliefs don't affect the illness's outcome, as shown by this-and-this study" and "even if you firmly believe CFS is affected by 'illness beliefs' the data doesn't support you and it therefore doesn't make sense to treat patients under that assumption."

The central behavioral principle of CBT in CFS is to assign patients a physical activity, usually walking, that is initiated at a very low level, say 5 min a day of low-effort walking, in order to build the patient’s endurance for gradually increased walk durations over several weeks to months. The protocol also includes healthy sleep scheduling and challenging of unhelpful beliefs. About 4/10 subjects achieve clinically relevant improvements with this approach. That is a notable finding, but it still leaves roughly ½ of CFS patients reporting unchanged or even worsened illness in behavioral intervention trials. Given the considerable publicity on how effective CBT is for CFS, the backlash from patients not helped by this approach is understandable.

Furthermore, a number of patient surveys have documented negative effects of a CBT-type approach. (cites Kindlon). ....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.

Boldfaced mine.

The PACE trial reported a recovery rate of 22–23% in the active behavioral intervention conditions similar to a previous intervention study in CFS. Recovery was defined at follow-up assessments by fatigue and physical function scores on standard self-report instruments that fall within broad population norms. Although such recovery criteria appear reasonable, a closer look reveals a number of concerning issues.

....aaaand it goes into some of them, including but not limited to:
  • The definition of 'recovery'
  • The effect of perception on recovery -- that is, do patients feel they now match their premorbid wellness, or not? This is different from 'I've recovered from my current episode' or 'I feel better than I did a month ago'
  • lack of objective measurements
  • potentially no net increase in activity IRL, just management of energy envelope
He doesn't do a Tuller but he gamely delves into a few of PACE's many issues.

Then we have this:

Of the three successful CBT trials that utilized more objective actigraphy-based physical activity outcomes, none found improvements in actigraphy from pre- to post-treatment or between intervention and control groups. 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. As suggested in illness management-oriented trials in CFS, patients may still be living within a safety ‘envelope’ that avoids prolonged post-exertional symptom flare-ups, rather than enjoying resilient levels of recovered function and symptom alleviation. Such a management strategy could still lead to substantive improvements in fatigue and function. But this type of outcome would seem to be more consistent with a hypothesis of successful adaptation in combination with varying levels of improved functioning rather than full recovery.

So basically if patients learn to be as active as they can within their energy envelope that's a win, but that's not 'recovery'.

And we wind down with:

Finally, it is important to recognize that a recovery rate below 25% as reported in the PACE trial and other CBT studies with similar outcome criteria, even if accepted as a full or nearly full restoration of health (a questionable assumption), still leaves the vast majority of these patients with significant symptoms and impairments. Yet the publicity generated by highlighting recovery outcomes in CFS far exceeds the relatively modest results found for most patients in published behavioral intervention research. This is a vexing and frustrating issue for CFS patients who may be directed by practitioners and others to undergo CBT as an apparently curative treatment.

It ends with stuff about how to engage with patients -- and suggests not to call any kind of therapy CBT. I think this is the only bit, apart from the intro which doesn't clearly outline his stance, that rubbed me the wrong way. Admittedly, CBT is used for other serious illnesses but it means something very different -- and is practiced very differently -- to and on ME/CFS patients.

All told though, it's not only "not bad" -- it expresses and outlines many of the views of the patient community while still being geared towards physicians.

I removed citations because they were showing up oddly here, with the entire APA-style citation inserted into the dialogue, but if you want to double-check some facts here is the original article: http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1200884

-J
 

JaimeS

Senior Member
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3,408
Location
Silicon Valley, CA
Professor Fred Friedberg seems unable to grasp that the CFS community objects to being told CBT will cure their problem. How can he not see that?

He literally says exactly that!

Finally, it is important to recognize that a recovery rate below 25% as reported in the PACE trial and other CBT studies with similar outcome criteria, even if accepted as a full or nearly full restoration of health (a questionable assumption), still leaves the vast majority of these patients with significant symptoms and impairments. Yet the publicity generated by highlighting recovery outcomes in CFS far exceeds the relatively modest results found for most patients in published behavioral intervention research. This is a vexing and frustrating issue for CFS patients who may be directed by practitioners and others to undergo CBT as an apparently curative treatment.
 

RogerBlack

Senior Member
Messages
902
He literally says exactly that!
It can be hard for us not to lash out at people who are not the usual supportive crowd.

Reading the article in question, rather than seeing the quotes he's contrasting against does indeed lead to the conclusion this is a good article.
http://www.tandfonline.com/author/Friedberg,+Fred - his publications in that journal seem to be quite on-topic and reasonable.

For example
http://www.tandfonline.com/doi/full/10.1080/21641846.2015.1090801
On self managment of people who did not simply improve after first attempt.
Two recent self-management studies by Collinge et al.[14 Collinge W, Yarnold PR, Soltysik RC. Fibromyalgia symptom reduction by online behavioral self-monitoring, longitudinal single subject analysis and automated delivery of individualized guidance. J Med Sci. 2013;5(9):546–553.,15 Collinge W, Soltysik RC, Yarnold PR. An internet-based intervention for fibromyalgia self-management: initial design and alpha test. Optimal Data Anal. 2010;1(1):163–175.] in fibromyalgia patients utilized internet-based self-monitoring of daily activities, symptoms, sleep patterns, dietary intake, and medications. Twenty-two days of diary data were required to generate a statistically-based “smart” profile of the patient's behavior. Examples of profile-generated advice to individual patients included “Your pain level is lower when going to bed no later than 9:50 p.m.” (bivariate) and “Your fatigue is lower when lunch is no later than 12:20 p.m. AND morning exercise no more than 5 min” (multivariate). Moderate use (3 times weekly over 3 months) increased the likelihood of clinically significant improvements in pain, memory, gastrointestinal problems, depression, fatigue, and concentration; heavy use (4.5 times weekly × 5 months) produced the above gains plus improvement in stiffness and sleep difficulties. Thus, web-based behavioral self-monitoring with personally tailored feedback enabled fibromyalgia sufferers to significantly reduce symptom levels over time.

And then going on to relate this to CFS.
He's not saying the behaviours are 'avoiding getting better' - he's saying that horribly fatigued people are not great at recognising and dealing with their fatigue to avoid future crashes, and actual proper monitoring and help may enable them to better manage.
 
Messages
2,158
Here's part of the Friedberg article that strikes me as interesting (sorry, I don't know how to turn quotes pink):

'CBT and illness beliefs in CFS

A number of psychological studies have examined the role of illness beliefs as a potential persistence factor in prolonged fatigue states, including CFS.[6Nijrolder I, van der HorstH, van der Windt D.Prognosis of fatigue: a systematic review. J Psychosom Res.2008;64(4):335–49. doi:10.1016/j.jpsychores.2007.11.001[CrossRef], [PubMed],[Web of Science ®]] Certain beliefs have been postulated to predict poor outcomes, in particular ascribing the illness to a physical or somatic cause (given the lack of consistent medical findings or an objective test for diagnosis). Yet CBT studies in CFS have not confirmed the hypothesis that somatic attributions predict poor outcomes.[6Nijrolder I, van der HorstH, van der Windt D.Prognosis of fatigue: a systematic review. J Psychosom Res.2008;64(4):335–49. doi:10.1016/j.jpsychores.2007.11.001[CrossRef], [PubMed],[Web of Science ®]] 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.’[7Deale A, Chalder T,Wessely S. Illness beliefs and treatment outcome in chronic fatigue syndrome. J Psychosom Res.1998;45(1):77–83. doi:10.1016/S0022-3999(98)00021-X[CrossRef], [PubMed],[Web of Science ®], 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.

As a result, patients may believe that practitioners of CBT will try to convince them that their personal beliefs maintain their illness and minimize any role for (a more legitimizing) biomedical pathology. 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.'

-------

The above quote makes it clear that CBT does not change ME/CFS patients' beliefs in a physical cause, and CBT based on trying to change this belief does not work. In other words, what a patient believes doesn't effect the outcome. So far, so good. It's excellent that he points out that trying to change 'false illness beliefs' is ineffective.

However, he does not seem to go the next step and say this is because there are no 'false illness beliefs' because ME/CFS is a physical illness. I think this is what Professor Hooper is rightly pointing out. The treatment doesn't work because it's based on a false premise, not because it's not a good enough method or because beliefs don't influence outcome, but because we are actually physically ill.

I therefore think Prof. Hooper is right to criticise the paper on this basis, though perhaps he is unfair to damn it altogether. The paper does make lots of good points about the weaknesses of the PACE trial, and I'm certainly grateful for that.

Friedberg's conclusion includes:
------

'Without the disease-denying rhetoric and exaggerated claims regarding recovery that have been linked to this illness, perhaps CBT would not have the bad reputation it has among many in the CFS community. That said, many patients do not care about the type of intervention as long as it helps them. Yet patient reaction particularly among activists has thoroughly rejected the utility of CBT. Perhaps a new approach to educating providers (and influential medical practice organizations) is needed in this divisive environment. According to a recent qualitative study [20Chew-Graham C, Brooks J, Wearden A, Dowrick C,Peters S. Factors influencing engagement of patients in a novel intervention for CFS/ME: a qualitative study. Prim Health Care Res Dev. 2011;12(2):112–22. doi: 10.1017/S146342361000037X[CrossRef], [PubMed]] 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.'

-----

So it seems he is concluding that CBT still has a place in ME/CFS management so long as the practitioner and patient hold the same beliefs about the cause. Not sure where this gets us.

He implies that trying to change illness beliefs is ineffective, rather than wrong, and he still seems to think it is not known whether ME/CFS has a physical or psychological cause. That's where I can't agree with him.
 
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He literally says exactly that!

Thanks for the correction, because it is an important one. I obviously inferred too much into the first sentence of Professor Hooper's letter. I think Professor Hooper's main beef is indicated by this excerpt from his letter:-

"However, a key consideration which he fails to mention is the significant difference between supportive CBT and directive CBT."

I do not think Professor Hooper is saying Professor Friedberg is entirely wrong in what he says, but saying the message is unclear. That Professor Friedberg, in rightly advocating the benefits of supportive CBT, is not clarifying that in the UK it is directive CBT that "the system" tries to shot blast ME/CFS sufferers with, and that patients justifiably get very annoyed by.

Basically, that CBT is a good medical tool being used in an abusive way. Just like the way a scalpel can be used for good or bad.

I think that no matter what physically debilitating condition a person may be suffering from, CBT is part of a suite of measures which can help some people cope with the issues. Also, if an underlying physical condition really has been fixed, but mind and body have had to adapt to that condition for a long time, then a process of rehabilitation will likely needed, and CBT might have a role there also. It supports, but does not fix, physical conditions.

So my apologies to Professor Friedberg for misunderstanding where he was coming from.
 
(sorry, I don't know how to turn quotes pink)

Inserting quotes;
Screen Shot 2016-10-16 at 12.31.43.png

So use the drop down menu to select quote. You can either hit quote first and then paste the quote inside the quote 'limits' or you can paste the quote into your reply, highlight it, and then hit quote.

Hope this helps :)
 
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2,391
Location
UK
So it seems he is concluding that CBT still has a place in ME/CFS management so long as the practitioner and patient hold the same beliefs about the cause. Not sure where this gets us.

Two possibilities I can think of:-

1) With any physically debilitating illness, there is potentially an additional depressive effect, which might include an element of fatigue. If so then CBT might help, but only with the additional, secondary effect, not the primary.

2) In some cases, CBT might be helpful in rehabilitation from such a condition. It may be that with ME/CFS, for anyone lucky enough that the physical cause may have been resolved somehow, then CBT might speed up their rehabilitation. As Dr Sarah Myhill says:-

"There is a place for CBT, but only when the underlying physical issues have been identified and only when these physical issues have been, for the most part, resolved. Some patients won't ever 'need' CBT and will happily progress to good fitness levels without this intervention."

http://www.drmyhill.co.uk/wiki/CFS_-_treatments_which_are_not_worth_trying
 

RogerBlack

Senior Member
Messages
902
So it seems he is concluding that CBT still has a place in ME/CFS management so long as the practitioner and patient hold the same beliefs about the cause. Not sure where this gets us.

He implies that trying to change illness beliefs is ineffective, rather than wrong, and he still seems to think it is not known whether ME/CFS has a physical or psychological cause. That's where I can't agree with him.

I read it - in conjunction with his other papers as trying to flat-out avoid saying 'CBT as practised in the UK for CFS is abusive and not appropriate for a physical disease'.
Which is likely just to alienate the people (the clinicians) he's trying to reach.

I do not believe CBT can help the physical symptoms of my response to stressors - mental and physical.

Is it possible that CBT could help me with: Worrying about the future excessively, coping strategies for interacting with people, accepting that sometimes I can't do things, better planning for the future rather than pretending it doesn't exist, being able to ask others for help - perhaps.
All of this has directly and indirectly worsened my condition due to either the mental effort of concentrating on it, or using my physical energy badly.

However, CBT as practised in the NHS (at least officially) has the rhetoric of 'perpetuating their illness beliefs', which means that even if I could access them, there is a large chance that I would get a therapist that believes the party line, and won't actually try to help with the above.
 

JaimeS

Senior Member
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3,408
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Silicon Valley, CA
However, he does not seem to go the next step and say this is because there are no 'false illness beliefs' because ME/CFS is a physical illness. I think this is what Professor Hooper is rightly pointing out. The treatment doesn't work because it's based on a false premise, not because it's not a good enough method or because beliefs don't influence outcome, but because we are actually physically ill.

I understand, but Friedberg would have to go in a great more depth on the biological factors in the illness to make that argument effectively, and:
  • His background is in psychology, and he is not qualified to make these claims
  • That is not the purpose of the article
The purpose of the article is to outline why ME patients have such issues being prescribed CBT, and it's successful at that. An article can't be all things to all people and address all of the issues that concern us in a thorough manner -- that would take a book!

So it seems he is concluding that CBT still has a place in ME/CFS management so long as the practitioner and patient hold the same beliefs about the cause. Not sure where this gets us.

I disagree (a bit!) with that interpretation. It seems to me that he is saying that because people deny that CFS is a 'real' disease ("Without the disease-denying rhetoric"), and because people swear that CBT makes patients recover (and exaggerated claims regarding recovery) CBT is unacceptable to us as patients.

Probably true.

Then he qualifies with a statement that means "I'm sure there are some patients who will still try anything that even has the slightest chance of helping them.

Definitely true.

As far as "he is concluding that CBT has a place" in ME, sure he is, and I agree. (Stop your spit-takes and listen, guys.) CBT in its original incarnation is supposed to help you deal with the psychological consequences of illness. It's not meant to be engineered to convince you you're not sick at all. Wessley and Chalder warped it from its original incarnation but used the same name, because they know that CBT in it original form is a harmless intervention against which no one would argue. What they're doing is very different, but most therapists out there in the world don't know that unless they live in the UK and have worked with ME patients... Friedberg is an American who is aware of this. Thus it all sounds very on the up-and-up and we look like reactive morons when we argue so passionately against it. That's the idea.

Friedberg is right: without the psychosomatic connotations and the insistence it's curative, I would have happily gone to a therapist to talk about my sudden loss of function, irrevocable ejection from my former place in life, and the occasional disbelief or misunderstanding of physicians or family. Contracting a debilitating illness is a psychological challenge that luckily many will never have to face. Because of the widely-held belief -- a minority here in the US, but still VERY widely held -- that CFS or whatever we'd like to call it is psychosomatic or has a psychological component -- I will probably never have the opportunity to speak to a therapist and work through the tangle of emotions that having this illness has engendered. Instead, PR has had to be my therapy, my support group, and my 'safe space' rolled into one.

He implies that trying to change illness beliefs is ineffective, rather than wrong, and he still seems to think it is not known whether ME/CFS has a physical or psychological cause. That's where I can't agree with him.

He doesn't imply that; he just doesn't take our side on that matter. He doesn't because again, then he'd have to argue biomedicine, and others would rightly point out that it's not his area of expertise. He's being conservative, not anti-patient.

To put it another way, he has no proof that he personally can support or argue for, from a position of authority. He could try anyway, but then other scientists and physicians reading his work would laugh at him... rightfully. (This psych guy is talking about cytokines... what does he know about cytokines?) And he would lose his audience. Again -- rightfully so.

is not clarifying that in the UK it is directive CBT that "the system" tries to shot blast ME/CFS sufferers with

He's a researcher and not a patient advocate. We can't expect everyone to take up METAPHORICAL (hi, QMUL!) arms against UK psych research as a whole. It's not just tilting at windmills, it undermines his argument to those who don't know the full story.

Which is likely just to alienate the people (the clinicians) he's trying to reach.

Exactly.

Basically, that CBT is a good medical tool being used in an abusive way. Just like the way a scalpel can be used for good or bad.

I do think that he has the authority to say this, and I wish that he had. Can you imagine thousands of psychologists signing something saying that "directive" CBT for ME is unethical? That is something I would like to see.

I think in general we've come across an academic that we'd like to shove into some armor and push into the ring of advocacy. Not everybody is going to be an advocate... but that also doesn't make them the Enemy. :)

-J
 

Jo Best

Senior Member
Messages
1,032
The protocol for CFS aside, there is controversy among Psychology practitioners about CBT and concerns that it's over-rated. There's debate in the profession as to whether CBT is more effective than placebo and petitions like this one, set up by the Alliance for Counselling & Psychotherapy: supporting diversity, responsibility, autonomy and innovation in the psychological therapies, to NICE (not connected with CFS or ME) - http://www.ipetitions.com/petition/stop_nice-iapt_bias/
 
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@JaimeS, I'm sure you're right that Friedberg has made a useful contribution that I certainly hope other psychs will read and understand. I don't see him as the enemy.

If they could all accept his argument that they should stop using the Wessley form of distorted CBT to try to change illness beliefs that would be a huge step forward. His evidence based arguments that this version of CBT:

a) doesn't change illness beliefs
b) doesn't improve patient outcomes
c) and that illness beliefs don't effect outcomes

is a very powerful argument and I'm glad he's made it.

As you rightly say, adding the further argument:

d) ME/CFS is a physical illness, so the patients' illness beliefs are correct

would be beyond the scope of his paper.

What I was trying to say was that I'm glad Freidberg went as far as he did, but I also think a follow up letter from Malcolm Hooper that does take that extra step d) is justified and I hope it will get published.
 

JaimeS

Senior Member
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3,408
Location
Silicon Valley, CA
The protocol for CFS aside, there is controversy among Psychology practitioners about CBT and concerns that it's over-rated. There's debate in the profession as to whether CBT is more effective than placebo and petitions like this one, set up by the Alliance for Counselling & Psychotherapy: supporting diversity, responsibility, autonomy and innovation in the psychological therapies, to NICE (not connected with CFS or ME) - http://www.ipetitions.com/petition/stop_nice-iapt_bias/

That's very interesting, Jo, thanks for sharing!

What I was trying to say was that I'm glad Freidberg went as far as he did, but I also think a follow up letter from Malcolm Hooper that does take that extra step d) is justified and I hope it will get published.

Thanks for clarifying, and I agree with all but that last part. Hooper's work seems antagonistic towards Friedberg, so I hope it gets revised and then published! :D

-J
 

eafw

Senior Member
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936
Location
UK
there is controversy among Psychology practitioners about CBT and concerns that it's over-rated.

There are also many people who have been on the receiving end of CBT here in the UK, who will say how useless it is. It has very limited value but has virtually taken over in the NHS and they try and shoehorn it in everywhere - pain managment, expert patient etc all very CBT influenced.