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COGNITIVE BEHAVIORAL THERAPY A CRITIQUE OF THE VIEW FROM THE CDC SATELLITE CONFERENCE (Sept. 18, l997) by Judith Fleet Wisdom, M.A.

In the academic field of sociology, where the rules of research methodology and statistics are not all that different, in most respects, from those in medicine and other fields, there is a concept called "the Hawthorne effect." Though I should know, I don't, as to whether the research design/implications the Hawthorne effect refers to is referred to by the same name in fields other than sociology.

What I do know, however, is that what it refers to is a problem that has to be dealt with in all scientific research. For, it refers to the problem of separating out the impact of being researched upon on the subjects from the impact of the technique, material, or process being tested.

What is at issue is this: When subjecting human beings to research there is always the possibility that the attention paid them just by being researched, having extra social interaction in their lives, especially caring interaction, the actual fact of extra care being given them REGARDLESS of what the care is, their experiencing efforts and successes in someone understanding their particular problems -- quite apart from the particular technique being tested -- will sometimes actually help them change or feel better. (This is related to but different from the placebo effect.)

And, especially if the subjects are in a difficult life situation, where their problems have been poorly understood and/or they have been isolated from comprehending care, they can be very susceptible to experience a salutary effect from this attention with the results that the outcome of the study, the change and improvement they experience can be from the Hawthorne effect. In research it isn't always easy to come up with research designs to measure and account for this. Sometimes, yes; sometimes, no.

At the recent (Sept l8) CDC satellite conference one of the proponents of cognitive behavioral therapy (CBT), Dr. Sharpe, reported that while an earlier experiment done by Lloyd (I think it was Lloyd) showed that CBT had no helpful effect on the functioning of PWCs, that his study (Sharpe's) and a subsequent one did.

(I should say here that I haven't had the advantage of reading the reports of any of these studies or their methods--I am only speaking to Sharpe's comments at the conference.)

By concluding from his and the subsequent study that CBT had a helpful impact he seemed fairly clearly to mean that in taking what he depicted as people with serious cases (he gave their Karnovsky disability score but I didn't catch it so I don't know how he delineated "serious") and subjecting them to a longer trial of CBT than did Lloyd, and possibly a more encompassing one, the test subjects came out with a rise in their Karnovsky score of at least l0 points. This rise he treated as being a significant improvement and which, though I haven't examined the Karnovsky scale well, I will trust him as being significant (for now). I believe he also said that this improvement wasn't just immediate, but lasted and even emerged later.

I thought long and hard about the implications and meaning of what he reported. And while I'm hampered by neither knowing the type of subjects selected or the specifics of the so-called CBT treatment (see comments below on this) given, I am pretty sure that if I (I don't know my Karnovsky score but I've seen the scale and I'm embarrassingly and painfully low on it, alas) were subjected to close, attentive care and help in guidance with rehabilitative exercise by people well-schooled in the vagaries of CFIDS, deconditioning in long illness (different than in healthy couch-potatoes--which is rarely mentioned), and the metabolism of exercise intolerance in CFIDS (a poorly understood but still described phenomenon), I would, in fact, probably do a better job than I sometimes (not always) do in pulling myself out of crashes. Especially since I've done it so many times that, quite frankly, I am very weary at returning to square one for the umpteenth time.

In other words I might get some help from his program. Although I suspect I'd need repeat exposures, since so many things other than patient behavior cause crashes that with a middling-to-bad case of CFIDS, you cannot prevent retrenchment of the progress his work might well have aided in achieving. This is said from experience, other case reports (lots), and physician confirmation, not experiment. But he provided no experimental data that would refute it.

However, and this is what I feel to be the central point and argument I have with the proponents of CBT for CFIDS. I am not at all sure that what they are doing is indeed CBT!

I think what they are doing very likely does speak to the need for what we are mostly deprived of--close, well-informed support and guidance to help us emerge from crashes. With the result that some of us don't do as good a job as could be done. And some do, sometimes, and don't other times.

CBT, however, as he mentioned but sashayed away from rather quickly, originally was developed for the treatment of depression. It is based on revamping deeply, almost life-long entrenched depression-engendering thought patterns. I do not think that is what we are talking about in helping people do the disciplined work of carefully reading their body and their mind with respect to the emergence from the pains and aches of CFS crashes. That is, I do not believe the sometime failure to do so is evidence of a massive personality disorder that is cognitive in nature or cognitively fixed.

I think what Sharpe is calling CBT is instead a well-guided mixture of knowledge of the physical aspects of deconditioning in chronic illness, exercise intolerance in CFIDS, and comprehension, perhaps, of the actually very realistic confusion over what is too much or too little to do, plus some weariness about figuring it all out when your heart wants tofly. In calling this CBT and speaking of "mood," it suggests that the failure to emerge from the physical disability of CFS is deeply entrenched in the neuroendocrinological aspects of the cognitive problems many PWCs experience. I think that is quite unfounded. And it "professionalizes" and "medicalizes" and even "psychologizes" what is an important intervention that is based mostly on common sense mixed with some knowledge of exercise physiology related to CFIDS.

I wouldn't turn it down if I found a good practitioner of it and could afford it. And remember, relatedly, that at the conference Dr. Komaroff said that it (what he called CBT also) is very therapist bound, meaning that its effectiveness relies not with the technique but with what the particular therapist does, which speaks less of CBT than what I have described--a very CFIDS-related mixture of attention to the details of the individual patient's condition and to both exercise physiology and intolerance. With maybe a dollop of human understanding! CBT I think this is not!

I should add here what I said in my original account of the conference. That while in words it was said to be a serious biologically based illness, in its emphasis and focus it virtually ignored biology and pharmacology, with the exception of the very dicey and limited successes of Florinef, NSAIDS, and anti-depressants (mostly tricyclics). Again the most interesting bit of biochemistry came from Steven Straus (of NIH), when he spoke of the low cortisol, the failure of low doses of hydrocortisone to correct HPA axis based low cortisol without depressing adrenal function, and the need therefore to try to somehow find some pharmacological means that are safe and effective to work directly with corticotropin-releasing hormone, with the implication that in so doing cortisol could be raised beneficially without depressing adrenal function. Dr. Komaroff said without doubt he felt CFS was biologically based. Yet it was he who counseled the most routine treatment, whose cornerstone was listening and explaining. And though these are in too short supply in medicine with an illness of this sort, in this context with this illness and given the recommended treatments, which utterly excluded any forays into dealing with infection or the immune system, demonstrated at the least a kind of "bedside manner" approach to CFIDS and at the worst an approach that we mostly needed understanding and kindness.

Judith Fleet Wisdom
PWC and disabled for l7 years

Former Director, Psychosocial Training Program in a Family
Medicine Residency Program at a large urban teaching hospital

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Copyright © 1997 - 2000 Judith Wisdom
Published September 20, 1997