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

[charles shepherd]

CBT and CFS - Why is it so vilified in the chronic fatigue syndrome community?

Editorial by Fred Friedberg

Full text:

http://www.meassociation.org.uk/201...igue-biomedicine-health-behavior-7-july-2016/

 

[Esther12]

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 (even if the criticism here is a bit limp). I am a bit worried that Freidberg is a bit defensive of CBT as criticisms of CBT can (and imo should) be applied more widely to behavioral management techniques for CFS of the sort he has been involved in.

Freidberg seemed too positive about the benefits of CBT for CFS:

About 4/10 subjects achieve clinically relevant improvements with this approach.[2]

2. Price JR, Mitchelle E, Tidy E, Cognitive behavior therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev. 2008;(3):CD001027. doi:10.1002/14651858.CD001027.pub2. [CrossRef], [PubMed], [Web of Science ®]

Also, I don't think that this is right:

It has rarely provoked controversy, much less outright hostility.

The controversy around CBT for CFS is unusual, and that it is patients who've had to lead the charge against poor quality research means that it is not just a dry academic debate for them, but CBT is controversial in other areas too, and it should be.

I don't think that Freidberg is as critical as he should be about a lot of the biopsychosocial CFS research mentioned. I remember thinking that this paper was pretty worthless... Chew Graham & co being given the power to interpret what 19 patients tell them is not good evidence for anything imo:

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.

20. Chew-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]

 

[A.B.]

Proper criticism of CBT will never be done by a psychologist because it would mean destroying CBT and they would be left with very little.

 

[Living Dead]

Reasons:

• More patients get worse than better (i.e. an unacceptable risk/benefit profile). NNT in PACE was 7. In other words 6 out of 7 patients were non-responders or even worsened.
  
• The "CBT" applied to CFS is appears to often be significantly different from the CBT applied to other conditions.
• When the patient doesn't get better, or get worse, he/she is blamed for not trying hard enough, instead of the healthcare practictioners admitting that the treatment didn't work in this case. This is (hopefully!) not the case for MS patients or the like.
  
• Patients can be required to attent CBT to get benefits. This is a problem if, for instance, the psychiatrist is on the second floor without elevator, and the patient is in a wheelchair. True story.

The most undercommunicated fact in this matter is that patients aren't "unwilling to try CBT". When patients say CBT doesn't work, it's because they tried it. They were required to (see the last bullet above) or it was the only treatment made available to them.

 

[A.B.]

There is no evidence that CBT is anything more than a placebo therapy. PACE results are entirely consistent with a placebo treatment: temporary improvement on self/observer rated outcomes, no to little improvement on more objective outcomes. The follow up results didn't differ between any of the groups.

But in the corrupt world of CBT, there is a wall of willful ignorance towards this (and other) problems and they just keep acting as if everything was fine while making a nice career paid for by the taxpayers that includes patients and their families that actually want a working treatment.

Treating CFS is merely an excuse to make a career with these pseudoscientific practices. CFS is an easy target because it's so poorly understood, and CBT promoters have played a large part in spreading misinformation, such as the idiotic idea that patients have "false illness beliefs" while there are several thousand research papers all pointing towards a complex biological illness. CBT researchers are abusing patients for their own gain.

 

[JohnCB]

In Fred Friedberg's favour, consider this extract

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.
Ref.
6. Nijrolder I, van der Horst H, 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 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 . It might get a better reception in medical circles for that reason.

On the other hand when I read this

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’;

I immediately thought of the PACE CBT manual which says that the whole point is 'to alter false illness beliefs' or words to that effect. How can you make the patient feel believed when the central aspect of the therapy is that the therapist does not believe them.

 

[Snowdrop]

When people feel CBT does work I expect it's no different from AA or other support groups--it's the support of other people and having them listen without judgement that is of value That is not properly CBT. Those who insist on saying it works generally have a vested interest.

 

[Esther12]

In Fred Friedberg's favour, consider this extract

Yes - I focused on the parts I was critical of, but there are parts which are useful. Overall I still think it's probably a net loss.

 

[Snowdrop]

The issue of efficacy of CBT might also be considered in a different way particularly for this community.

You can look at CBT dispassionately and do a bean counting type of assessment--this gives you the opportunity to look at strengths and weaknesses benefits and not.
But is that useful here?

One could argue that regardless of this type of accounting and whatever positives there might be--we might want to consider something like this:

People have died with ME some as a direct result of having the illness and at this point in time that has not changed. The people who have continued to give their support to CBT (because you never know--it might help) have been tacitly giving CBT and it's research the opportunity to flourish, be found useful and validated while biomedical research could not find money or researchers to pursue a treatment/biomarker/cure.

It is reasonable to argue that while CBT was/is being touted for ME it has taken away from real research--again while people have died and others continue to suffer.

One might ask, what is this need to keep defending CBT? And I'll say so bloody what if it has it's uses and positive points. So. Bloody. What.
The defense is all academic. It means litle in the face of so much suffering by so many. It's all trivial pursuit--a way to pass the time as an expert at something.

If any of these defenders knew years of suffering with severe multiple symptoms an bone crushing fatigue and pain for decades I very much doubt they'd be bothering about the great need to come to CBT's defense/be reasonable and fair/take care to show it's positive side blah blah blah.

I know this is a diatribe but I'm just really seriously fed up with not being well, not living my life and knowing the endless stonewalling of research and knowing a whole group of people have been wholesale labelled as needing an attitude adjustment while desperately ill--so marginalised and insulted. Then there's the disbelief of Dr's etc.

People. Have. Died. And all that was on offer was CBT/GET.

There is no reason to defend CBT to PWME. None at all.

 

[Living Dead]

I immediately thought of the PACE CBT manual which says that the whole point is 'to alter false illness beliefs' or words to that effect. How can you make the patient feel believed when the central aspect of the therapy is that the therapist does not believe them.

They don't have to administer the PACE type of CBT. They could use original CBT for depression, to help the patient to with coping. Which is what I think they do for all the other illnesses where CBT is used.

Of course they would need to "alter their false illness beliefs" and admit that CFS is a real illness first.

 

[Bob]

Hmm, I might have to read it again in order to make a more objective assessment of the paper, because the inaccurate details were distracting me. But I'm not impressed with much of the detail or some of the sentiments.

Why does he say that almost half of the PACE trial participants responded positively to CBT when it was roughly 15%? That's a really unhelpful inaccuracy.

I found the last paragraph of the paper disturbing, but perhaps it was just worded insensitively; it seems to patronisingly suggest that if physicians refer to CBT as something other than 'CBT' then the patients' prejudice won't cause them to object to it. But perhaps he didn't mean it like that.

I got lost in the section about recovery in the PACE trial, and thought it could be tighter and clearer.

There are some good aspects of the paper. e.g. He helpfully discusses the lack of positive objective outcomes in CBT trials and compares objective outcomes to subjective outcomes.

I can't see it making much difference in the wider scheme of things, but perhaps it will have its uses.

 

[TigerLilea]

I found the last paragraph of the paper disturbing, but perhaps it was just worded insensitively; it seems to patronisingly suggest that if physicians refer to CBT as something other than 'CBT' then the patients' prejudice won't cause them to object to it. But perhaps he didn't mean it like that.

I thought the article was fairly good until I read that last paragraph. It does seem that he is suggesting changing the wording but still using basically the same treatment.

 

[Esther12]

I found the last paragraph of the paper disturbing, but perhaps it was just worded insensitively; it seems to patronisingly suggest that if physicians refer to CBT as something other than 'CBT' then the patients' prejudice won't cause them to object to it.

Yes... but also, I quite enjoy the idea that 'CBT' as a term has become so toxic that medical staff need to avoid it. Conflicted!! Also, the title using 'vilification' does unfairly imply that patient's are unreasonable in their concerns,

 

[Bob]

I thought the article was fairly good until I read that last paragraph. It does seem that he is suggesting changing the wording but still using basically the same treatment.

But the preceding paragraph (i.e. the last but one paragraph) suggests that he's talking about making the intervention appropriate for a biomedical model of illness that patients find acceptable, rather then attempting to treat/modify alleged false illness beliefs. It's hard to know exactly what he means but it might simply be insensitive/clumsy phrasing rather than a suggestion that patients should be patronised or deceived.

 

[GreyOwl]

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.

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.

 

[Kati]

Dr Friedberg has interests in keeping CBT in contention as part of the treatments for ME and CFS: he is funded by NIH and his emplyoment depends on behavioral treatment of fatigue and CFS.

This editorial is simply reflecting his need to keep CBT as an acceptable treatment.

.

 

[Sean]

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:... ...and that the model of treatment offered matches the model of illness held by the patient.

Call me crazy, but maybe, just maybe, the best way to get patients to engage with an intervention is to make sure that the model of treatment matches the reality of the disease. And actually works.

 

[GreyOwl]

 

[Esther12]

Proper criticism of CBT will never be done by a psychologist because it would mean destroying CBT and they would be left with very little.

People who have been working within a particular field might be unlikely to slag off the 'mainstream' work of the field... but it does happen. There would still be value in a cautious, modest approach to psychology... even if not the sort of value some psychologists currently like to claim for themselves.

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. This piece reads to me like he's in a bit of an uncomfortable and frustrating position and doesn't know what to do about it. I'm a bit sympathetic to that, but really, what matters is how patients are treated, and ensuring that it's not seen as acceptable for researchers of clinicians to make misleading claims about the efficacy of treatments.

I get the impression Freidberg would personally like to avoid the sort of adversarial debate that I think we need more of.

 

[Aurator]

CBT and CFS - Why is it so vilified in the chronic fatigue syndrome community?

If Dr Friedberg didn't already know the answer to that question before he wrote his paper then I have to ask whether he is really qualified to be writing it.

Dr Friedberg, it is far from unreasonable for CFS patients to have vilified (as you put it) CBT, because CBT has been consistently misused on them for many years, the rationale behind it having too often been that it is a way of treating the condition, not simply of helping patients come to terms with having it.

Since you yourself appear to acknowledge how regrettable this is, and are also presumably prepared to acknowledge that no other group of patients with a different biomedical condition who have been offered CBT have been offered it with a tacit assumption on the part of the people administering it that it has the potential to cure them of their core condition, why are you surprised at the vilification?

In the case of CFS patients, CBT has been misused, and patients on the receiving end of a misused treatment are justified in feeling abused.