Cognitive Behavioral Therapy and CFS

Cognitive behavior therapy (CBT) is therapy that is based on a person’s perception of his or her illness and the impact that it has on the person’s life. CBT is not a cure for CFS and it is not a substitute for medical care. Working with a CBT therapist, the person can examine beliefs, concerns and coping behaviors and modify these as necessary, to develop constructive coping strategies to compensate for the multiple physical and emotional impacts of CFS. 

• Research conducted in the U.S. and other countries has shown that CBT can improve function and symptom management for people with CFS. It appears to have limited effect on pain and fatigue. CBT will not cure CFS, nor will it alleviate all symptoms for people with the illness. It is simply intended to assist the individual to better manage the illness. Although CBT refers to a specific form of psychotherapy, some clinicians and counselors use the terms pacing or energy management to describe similar approaches to improving strength and physical functioning. Many CFS expert clinicians informally provide CBT-like services as an adjunct to medical care to help their patients cope with the losses associated with CFS and chronic illness.
• Psychological factors are relevant to any illness process. CBT has been shown to help people deal with these factors and better cope with the life-altering issues of chronic illness. Awareness of the role that stress can play in exacerbating the symptoms of CFS is essential. CBT assists people to better recognize and manage factors than can contribute to worse symptoms.
• CBT often involves the introduction of paced, slowly graduated physical activity. It is imperative that any therapeutic activity plan (designed by a trained professional) be highly individualized for each person with CFS, based on their present activity tolerance. Even people with extremely limited tolerance can very gradually improve strength and conditioning. People with CFS often engage in "boom or bust" or “push-crash” cycles: when feeling well, they do too much, and then become exhausted for an extended period (a phenomenon called post-exertional malaise). Managing energy by pacing activities is essential to improved function and symptom management. This is not to be confused with beginning a traditional exercise regimen. Recent studies of CFS patients have shown that over-exertion can have harmful results because of energy production defects occurring at the cellular level.
• Before beginning CBT (or any treatment program), it’s important to learn some essential facts about it. CBT is used to improve coping and symptom management of many chronic illnesses, including asthma, diabetes and heart disease and much has been written about its application in these conditions as well as CFS. It is actually one of the best-studied therapies for CFS but has been extremely controversial when used to falsely justify a psychological basis for the condition, especially in countries whose health care systems have used CBT in place of standard medical care for the treatment of CFS.
• Carefully adhering to CBT protocol is critically important to successful therapy. In research studies, people with CFS have higher drop-out rates in CBT compared to other types of therapy. For people with CFS, worsening symptoms is the main reason cited for discontinuing CBT. Again, this may be avoided if a paced, personalized plan is followed. When activities are tailored to the individual’s capabilities, a skilled professional can assist in setting and reaching realistic goals. This individualized approach is particularly important for people who have severe CFS and very limited mobility.
• CBT requires special training and must be administered by a skilled specialist.  It should be noted that psychologists are not the only health care professionals that can successfully guide CBT. Nurses, physical and occupational therapists are examples of multidisciplinary providers who are trained in CBT. The CBT therapist needs to be familiar with CFS, be aware of the evidence for CFS as a biologically-based disorder and genuinely validate a person’s experience of living with a misunderstood illness.
• The National Association of Cognitive Behavioral Therapists available at 1-800-853-1135 may be able to assist in finding a trained provider in your area. Contacting local mental health provider groups, physical and occupational therapy practitioners or health care organizations may be helpful as well.
• CBT can be expensive and may not be covered by insurance, so be sure your exploration includes questions about cost and reimbursement (if appropriate).
• CBT has been well studied in CFS with funding from the U.S. federal government and other countries. The CFIDS Association has not funded any CBT research, or research on other psychological treatment approaches and does not advocate further spending on this form of adjunct therapy.

More information about CFS, activity management and pacing:

“ManagingYour Energy Envelope” by Bruce J. Campbell, PhD (The CFIDS Chronicle, Winter 2009)

“The ‘Skinny’ on Exercise” (CFIDSLink, September 2009)

“Pearls of Wisdom from a CFS Physician” by Dr. Lucinda Bateman (The CFIDS Chronicle, Spring 2008)

“Changing Tide: Reappraising CBT in CFS” by Dr. Eleanor Stein (The CFIDS Chronicle, Fall 2007)