Cognitive behavioral therapy (CBT) that includes graded exercise therapy (GET) is an extremely controversial treatment when it comes to chronic fatigue syndrome (ME/CFS). It's recommended by the American Centers For Disease Control (CDC) and several European health-care systems, and it's hotly debated in both the research and patient communities.
A quick glance over the research on CBT/GET for ME/CFS can be confusing. Some studies say it's highly effective, while others say it's ineffective and possibly even a harmful and unethical treatment.
In order to make sense of this conflicting information, it can help to first understand what the treatment entails and then look at some important differences in definitions and approaches to ME/CFS.
What is CBT/GET?
CBT is a short-term psychological treatment with the goal of changing your thoughts toward certain things as well as your behaviors toward them. It's used to treat both psychological and physiological conditions, often to help with coping mechanisms and to break bad habits that may perpetuate or worsen symptoms.
GET is a common aspect of CBT. Treatment typically starts with a few minutes of low-intensity exercise and then gradually increases the duration and intensity over time. The goal is to alleviate fears of exercise and reverse the deconditioning that can accompany illness.
What's Behind the Controversy?
The controversy comes from a problem that's central to ME/CFS research - competing definitions of what the condition is.
One set of researchers believes that it's a physiological disease involving complex biological abnormalities triggered by infection, environmental toxins, other factors that cause physiological stress, or a combination of these elements. When they select study participants, they may use one of two definitions of the condition:
- The 1994 CDC criteria proposed by the International Chronic Fatigue Syndrome Study Group, usually called the Fukuda definition, after the paper's author, Keiji Fukuda;
- OR the 2010 Canadian criteria, which is regarded as a more stringent and specific definition than Fukuda, requires more physical symptoms such as post-exertional malaise, and excludes patients with symptoms of mental illness;
- OR the International Consensus Criteria for ME (myalgic encephalomyelitis,) which replaces "fatigue" with "post-exertional neuroimmune exhaustion" and requires several physiological symptoms.
Another set of researchers emphasizes treatment of the psychological and behavioral aspects of CBT/GET. To select study participants, they may use:
- The Fukuda definition;
- OR the 1991 Oxford criteria, which includes chronic fatigue of unknown origin along with post-infection fatigue syndrome.
- OR what's called the CDC empirical definition, which is a revised version of the Fukuda definition instituted in 2005 by the CDC's former head of chronic fatigue syndrome research.
This camp often recommends CBT/GET as the primary and sometimes only treatment for ME/CFS.
With five different definitions in play, it's easy to see how researchers could reach vastly different conclusions. About the only thing that's generally agreed on is that the waters are muddied by all of the disagreement concerning the very nature of the illness.
CBT/GET Research & the Muddy Waters
Many positive studies of CBT/GET for ME/CFS have used the Oxford criteria. However, it should be noted that compared to those using Oxford, there are considerably fewer studies of CBT by researchers using Fukuda, Canadian or International Consensus criteria. What's more, several studies not using Oxford criteria question the evidence used to support the use of CBT, such as in Twisk 2009.
Looking at the middle ground - the researchers using the Fukuda definition - we do have some positive results.
In a 2008 study on juvenile chronic fatigue syndrome, researchers reported a significant increase in physical function, school attendance and fatigue. Improvement was maintained at a two-year follow-up. (The paper did not specify whether GET was included in CBT.)
Other papers reported:
- Improvements to fatigue and physical functioning, but with a large early drop-out rate (Scheeres K, et al);
- Moderate results that merit further study (Malouff JM, et al.);
- The possible benefits of GET should be assessed for the individual patient (Nunez, et al..)
Anecdotally, reports are as mixed as research would suggest, with some people saying CBT/GET restored their quality of life and functionality, while others say it made their illness substantially worse.
Certainly, the decision of whether to pursue CBT/GET as a treatment is a personal one, which should be made based on your individual case and with the guidance of your doctor.
Not all communities have therapists trained in CBT/GET, which can make it difficult for some people to get this treatment. Also, insurance companies may deny coverage unless you also have a diagnosed psychological illness, such as depression or anxiety. Phone- and web-based programs exist, so they may be an option to consider.
Your doctor may be able to refer you to a qualified practitioner. The resources here may also be helpful:
- ABCT: Association for Behavioral and Cognitive Therapies
- American Psychological Association: How to Choose a Psychologist
- Practice Central: Psychologist Locator
- Finding a Therapist for PTSD
Carruthers BM, et al. Journal of internal medicine. 2011 Oct;270(4):327-38. Myalgic encephalomyelitis: International Consensus Criteria.
Carruthers BM, et al. Journal of chronic fatigue syndrome. 2003 11 (1): 7-36. Myalgic encehpalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols.
Carruthers, Bruce M. and Marjorie I. van de Sande. All rights reserved. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners"
Centers for Disease Control and Prevention. "Diagnosing CFS" Accessed December 2012.
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