Thursday, February 17, 2011

CFS: Better With Therapy and Exercise?

In today's New York Times, David Tuller writes about a study that shows that psychotherapy is an effective treatment for chronic fatigue syndrome. In Psychotherapy Eases Chronic Fatigue, Study Shows, Tuller writes:

The new study, conducted at clinics in Britain and financed by that country’s government, is expected to lend ammunition to those who think the disease is primarily psychological or related to stress.

The authors note that the goal of cognitive behavioral therapy, the type of psychotherapy tested in the study, is to change the psychological factors “assumed to be responsible for perpetuation of the participant’s symptoms and disability.”

In the long-awaited study, patients who were randomly assigned to receive cognitive behavioral therapy or exercise therapy, in combination with specialized medical care, reported reduced fatigue levels and greater improvement in physical functioning than those receiving the medical care alone — or getting the medical care along with training in how to recognize the onset of fatigue and to adjust their activities accordingly.

Interesting. Generally, I like to stay away from the "it's all in your head" debates. I'll let our commenters do the talking here.


HappyOrganist said...

it's all food allergies ;D (a running joke in my sphere) =)

but sure - of course there's a mind body connection. The interesting thing to me is it seems to be a chicken and egg thing..

Anonymous said...

Isn't everything better with therapy? :) I am convinced that if more people tried it the world would be a much better place.

Anonymous said...

I found this exert interesting:

"Patient groups and some researchers have challenged the criteria used by the British investigators as likely to include many people with depression, which often causes severe fatigue. They also note that the study excluded patients who could not get to treatment centers, most likely ruling out some of the sickest patients. And at least one survey has found that exercise therapy can significantly worsen many patients’ symptoms. "

As one who experienced psych med withdrawal symptoms that were similar to what people with chronic fatigue report, there is no way in heck I could have gotten to a therapist's office when things were at its worse. I also didn't and still don't have the concentration (which is another issue for folks with chronic fatigue) to actively participate in a CBT session and then do the necessary follow up homework.

As an aside, I have found other ways to cope.

And sadly, even moderate walking for an hour greatly worsens things for me even currently. Yesterday, when it was so nice outside, I had to literally force myself to walk at a snail's pace.

Anyway, I think CBT is a great tool and it could certainly be useful in helping folks deal with chronic fatigue symptoms if they are able to take advantage of it.. But stories like this really bother me with the implication that the condition is in someone's head when there are studies that indicate otherwise.

If they are so concerned about the costs of meds, why not look into supplements and study what works? But no, according to mainstream medicine, alternative medicine is all a bunch of quackery.

With this all or nothing attitude, everyone loses, including the chronic fatigue sufferers.


Anonymous said...

The problem I've encounter with the "its all in your head" dx is then getting no treatment or support.

Honestly I dont care the cause of the problem, I care about feeling better and living my life to the fullest.

Instead I get the run around from my circle of providers where they all seem to point at each other and then ultimately at me as the cause of my pain/fatigue but none are providing ways to solve the problem.

If I could think my way out I would have done it already.

moviedoc said...

Instead of saying, "Pschotherapy helped therefor it's all in your head," maybe we see if we can find a condition or illness that is NOT helped by psychotherapy.

Anonymous said...

Movie Doc, you said,

"Instead of saying, "Pschotherapy helped therefor it's all in your head," maybe we see if we can find a condition or illness that is NOT helped by psychotherapy."

Why not instead of coming across in a sarcastic manner even if that wasn't your intention to simply explain why someone who had the "It all in your head" response might have misinterpreted the article?

Speaking of interpretation, I found this article on US News World Report alot more informative as to what really occurred. Unlike the NY Times article, it didn't give the impression that CSF was all in your head.

""Patients struggling with chronic fatigue syndrome may be helped the most when standard treatment is coupled with cognitive behavior therapy or exercise therapy, new British research suggests.""

I am curious as to what they consider to be standard treatment. Also, as I previously mentioned, the study excluded the sickest of people, who couldn't get to a treatment center.

"The research team behind the new study found little appreciable benefit with a third alternate therapeutic approach that focuses on helping patients strictly structure their activity and relaxation routines to match their severely reduced energy levels. This strategy, known as "adaptive pacing therapy," assumes that chronic fatigue syndrome is not, in fact, reversible with behavioral changes.""

Interestingly, I found this website by a Bruce Campbell, PhD,, who mostly recovered from CFS, without using medication or supplements within 4 years.

In light of the fact that the study found pacing to not be effective, blog readers might be interested in Dr. Campbell's take which was part of his recovery program.

Dr. Campbell decided the best approach for his recovery was to accept the fact that CFS might not be reversible and that he would have to come to terms with his "new normal" which was definitely pacing behavior. At the same time, he never gave up hope that things might improve with his dedication to changing his habits and routines which resulted in meditation and exercise therapy.


KAL said...

A number of issues are raised here. CFS aside, the first is that this trial was not as successful as hyped.

If you dig deeper and actually read both the registered protocols and the final study you will notice that the authors changed their endpoints to make their study appear more successful than it would have been if they had kept the original endpoints - and even by doing that, by the strictest standards, it was only mildly successful.

The protocol originally registered showed that ‘recovery,’ required an SF-36 PF score of 85 or over, however the final endpoints published were measured as: ‘back to normal’ – which only needed a SF-36 PF score of 60. Inclusion criteria for the trial required that patients have “severe and disabling fatigue” – this included SF-36 PF scores of up to 65.

Thus a more accurate statement of this finding would be: An additional 15% of patients in the CBT and GET conditions achieved normal functioning in comparison to standard medical care. The critical standard of clinical significance is that a therapy results in restoration of normal function and according to the study authors own data, many patients may have already been at or above the revised cutoff when they entered the trial.

So large doesn't automatically equal impressive in this case.

Secondly, the authors defined their patient cohort using a definition that only they use (and one they created and funded) and it does not include the cardinal symptom of post exertional malaise lasting more than 24-hours unrelieved by rest.

The international standard used by the vast majority of researchers, and the one used by researchers who study adaptive pacing and exercise induced abnormalities in CFS patients, is the original 1994 criteria.

So just saying you are studying fruit because apples and oranges are both round is disingenuous.

You don't have to be a rocket scientist to understand that extrapolation of, let's face it, a only mildly effective treatment to patients who are far far more ill than the cohort studied is highly problematic.

So should cognitive behavioral therapy and GET be used at all? Maybe. We know from other diseases besides CFS that CBT helps people cope with the very real psychosocial overlays that attend any severe disease on an individual basis. However, there is not scientific evidence that CBT reverses so much as the common cold much less "cures" disease. Does exercise "cure" exercise intolerance? This trial provided no objective scientific evidence that this is the case either because they did not study patients with what is medically known as exercise intolerance.

Of course if your cohort has people who have affective disorders only who got mixed in to the data set because very few variables were actually controlled for and the criteria for "fatigue" was deliberately vague then CBT and GET may be very appropriate for such people. Possibly, misdiagnosing MDD when a patient actually has a neuroimmune disease raises a number of ethical issues beyond ineffective and potentially harmful treatment.

If you don't use clean data sets RCTs are no more effective at generalization than smaller studies.

So why did they do this? Besides fitting with their ideology, many of the authors had financial conflicts of interest as well. Many of them consult for litigators who represent companies fighting disability claims and disability insurers who make money by not paying out. If these authors acting as paid consultants can say this person can be "cured" by CBT and GET then the company has a basis to deny the claim.

Or if the disability insurer can claim that CFS is a mental disorder they only pay two years of disability vs a lifetime for an organic disorder.

So yeah, just sayin' conflicts of interest are important to mention just as they are in drug trials.