Don’t let anyone tell you otherwise.

As a newly minted PhD I had the privilege of working on a three year National Institutes of Health (NIH) grant at Mt Sinai Medical Center that studied the effect of Cognitive Behavioral Therapy (CBT) on post-stroke depression. Our results supported our hypothesis, that CBT helped alleviate depression in people who were recovering from stroke. As a result the people who received CBT (as opposed to anti-depressant medication or a placebo) did better in their cognitive (perception, memory, language) and physical rehabilitation treatments. Therapy helped. 

Did that mean the stroke was psychosomatic? Of course not! No one would question that the stroke was a real physical/medical event.

Why do people think that studies in support of the notion that anyone with Chronic Fatigue Syndrome (CFS) does better if they receive CBT also support the idea that it must be psychosomatic?

Controversy continues to swirl around CFS and it is so frustrating for anyone suffering from it, studying it or treating it. A report by National Public Radio (NPR) this morning is a good example. Here is Cracking the Conundrum of Chronic Fatigue Syndrome in its entirety with my comments in bold.

Nearly three decades have passed since the debate began about a series of symptoms that have come to be known as chronic fatigue syndrome. It’s cause is still unknown, but over the years, researchers have identified various brain, immune system and energy metabolism irregularities involved. Some patients describe the syndrome as feeling like an “unrelenting, unremitting flu.”

Doctors say some treatments can help.

This is good news, right?

Arthur Barsky, a psychiatrist at Brigham and Women’s Hospital in Boston and a professor at Harvard Medical School, says patients need to change how they experience symptoms — typically pain, insomnia and anxiety. When patients adopt a more positive attitude, Barsky points out, it often translates into greater confidence and more energy.

OMG, this is said in such a simplistic manner! I admit I haven’t read the study so I don’t know if it’s the study or the reporting that is to blame. Did the reporter not read what they wrote in the paragraph above? “an unrelenting, unremitting flu” sounds like a lot more than “pain, insomnia and anxiety.” Plus I object to the notion that “a more positive attitude” is what is needed. The best thing I can say is maybe Dr. Barsky is being quoted out of context.

A study published this year in The Lancet found that a form of talk therapy, as well as exercise, offered relief for some patients. Researchers from the United Kingdom looked at cognitive behavior therapy, or CBT.

In the study, over 600 patients with chronic fatigue syndrome were assigned to different treatments. All of them received medical care for symptoms like pain, insomnia or anxiety.

These are CFS patients? And yet nothing is said about energy levels.

One group got counseled about how to pace activities. Another took part in an exercise program. And a third received the cognitive behavioral talk therapy. The therapy and the exercise group improved the most, reporting less fatigue, insomnia and anxiety.

There are so many different ways to measure and codify these variables I don’t know where to begin. Clinical research is tricky for this very reason. I really need to read the entire Lancet article. Lancet is a highly regarded peer reviewed medical journal so it is assumed that they did their due diligence before publishing the study.

Barsky says his patients do best when cognitive behavior therapy is also combined with gradually increased exercise. “People need to begin to push themselves in the face of their fatigue, because if you don’t, you become deconditioned and you get caught in a cycle which … makes fatigue worse,” says Barsky.

The notion that CFS patients don’t ‘push’ themselves enough is maddening. It could be the choice of words is unfortunate. If they had said something like ‘it is really hard for the CFS patient to find the energy to do any muscle movement. Activity/exercise for the CFS patent is much different than for a healthy individual. Expectations cannot be the same.’ That would go down easier.

But he cautions against overdoing it.

Really? Wow.

People should start with mild, gentle exercise like clearing the table, doing the dishes, or taking the dog for a short walk. Then, slowly build up to longer and more frequent walks, he says. 

I am going to say something not nice here so I won’t say anything at all.

Lucinda Bateman is a doctor at the Fatigue Consultation Clinic in Salt Lake City who specializes in chronic fatigue syndrome.

She’s skeptical about the Lancet study, pointing out that patients improved only moderately, and not much more than those who were counseled about pacing themselves.

Here’s where the reporting messes up again. We’re just talking about the exercise part right?

Bateman suggests her patients pace themselves, and try to do only as many activities as they can manage.

I totally agree with Dr. Bateman.

She says some patients get caught in a “push and crash” cycle. When symptoms abate and they feel better, they may go all out, exercising, doing errands and socializing. But soon that level of activity often comes to a crashing end and patients can relapse dramatically, even becoming bedridden for several days or longer.

Dr. Bateman describes a familiar pattern. It is very tempting to push everything that one wants to do through the little window any amount of energy provides.  

Bateman takes also issue with CBT’s implication that chronic fatigue syndrome is psychosomatic.

See? Why does Dr. Bateman think this? Unfortunately, I think I know why. Because people who have no experience with chronic illness can be quick to judge and dismiss the illness as ‘made up’. People with CFS feel that judgement.

I just want to be clear that CBT is so much more than ‘creating a more positive attitude’. That notion is stupid at worst, just misinformed at best. For example, CBT could help a person learn to take advantage of their little windows of energy without exhausting, themselves. The reasons we have a hard time holding back are many and complex, from standards set by our parents growing up, societal pressure, lack of support, internal values, core beliefs and more. CBT can help a person sort through all of it to get results that are truly therapeutic and self-esteem building, the opposite of making the person feel like it’s their fault for not being ‘more positive.’

We still don’t know what exactly causes the syndrome. And, like most professionals who treat patients, Bateman eagerly awaits the day when science can finally pinpoint its cause.

Amen, Dr. Bateman. Amen!