Lessons from a Recovery Story

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By Bruce Campbell

Martha Kilcoyne's book Defeat Chronic Fatigue Syndrome tells the story of her recovery from CFS. The book describes an eight-step approach similar to the one we teach in our program.

Here are her eight steps, with commentary and references to other resources on this site.

1) Understand Your CFS

She notes that each person's symptom pattern is different. People's situations are different in other respects as well, for example in the severity of their symptoms, the presence or absence of other medical issues, family situation, financial circumstances, coping skills and attitude. We agree with her advice to keep a simple health log to understand symptoms and what affects them.

2) Get Medical Help

While focusing on what patients can do to help themselves, she also advises finding a doctor to provide medical help. A doctor can provide medications that to ease the symptoms of CFS and FM, confirm a diagnosis, treat conditions that often accompany CFS and FM, and offer standard primary care. (See our articles How Your Doctor Can Help If You Have CFS/ME and Finding Support Group and Doctors. )

3) Treat Fatigue by Addressing Sleep

Kilcoyne notes that poor sleep often intensifies fatigue and advises that people treat fatigue by improving sleep. You can also help yourself by treating other causes of fatigue, such as overactivity, deconditioning and stress, and by addressing other symptoms.

4) Build a Support Network

The book asserts that people with CFS need a support network and suggests that the hub of the network is a "personal advocate," someone who knows you well and is willing to devote "a significant amount of time to your recovery." (Her husband filled that role for her.)

5) Accept and Adjust

Kilcoyne writes that to succeed, she "needed to adopt a new perspective -one which accepted CFS as a daily reality and the accompanying temporary lifestyle adjustments required by me, to defeat it." The combination of acceptance and adjustment is a good summary of the approach we advise. Noting that her progress was gradual, she describes how she stuck to a daily routine that balanced activity with scheduled rest periods, an approach we also teach.

6) Eat Well

She further advises that people eat healthily, take supplements and avoid alcohol, caffeine and nicotine. We would add two other ideas. First, many people with CFS experience reactions to particular foods. Some common culprits include dairy products, eggs, wheat and corn. Second, some people with CFS have other food-related conditions such as celiac disease, lactose intolerance or irritable bowel syndrome.

7) Manage Blood Pressure

Kilcoyne suffered from Neurally Mediated Hypotension (NMH), which she treated by drinking more water and adding salt to her diet. Her advice about blood pressure problems will apply to only some people with CFS, but her discussion is a good reminder of the fact that a majority of people with CFS to have one or more other medical conditions. Treating the other conditions lessens suffering and may improve CFS symptoms. For eight of the most common problems found together with CFS and FM, see our article Overlapping and Related Conditions.

8) Be Patient

Last, she advises that people "patiently make slow, steady forward progress." The way to improve is to "stick with the protocol" in order to replace the roller coaster with a gradual, steady uphill climb." We, too, believe that pacing is necessary in order to replace push and crash with stability and control.

Evaluation and Conclusion

Martha Kilcoyne has written a helpful book. She puts the emphasis in the right place, stressing that to live successfully with CFS requires comprehensive changes in one's life, applied with consistency. The chief limitation comes when she shifts from personal story to giving advice.

Her premise seems to be that what worked for her will work for everyone with CFS and will produce the same outcome (recovery). Since everyone is different, we suggest that people experiment to find what works for them in their unique situation. Nonetheless, her story can provide inspiration. While only a minority of people with CFS are likely to recover, all can learn from her model of self-management.