Note: Dr. Bruce Campbell directs the educational CFIDS and Fibromyalgia Self-Help website (www.cfidsselfhelp.org), and online self-help group discussion courses focused on practical ways to deal with the daily challenges of chronic illness.
A 2012 study* of long-term outcomes for people with CFS reported some surprising findings. Even though a large majority said that they no longer considered themselves to have CFS, they were significantly more impaired than healthy controls and much like the people still identifying themselves as CFS patients.
These findings are similar in two ways to what we often see among people in our self-help program. First, while improvement is reasonably common, a return to the pre-illness level of health is rare. In our experience with several thousand people, I would estimate that progress usually tops out at something like 50% to 60% of normal. There are people who do even better, but in our experience they are rare.
Second, we also observe that people with CFS/FM often have an inaccurate sense of their level of functioning. People in our program frequently overestimate their functional level by 5 or 10 points on our 100-point Rating Scale and occasionally are 20 to 25 points too high. (Note: If you would like to get a check on your self-perception, ask one or two other people to rate you. I did that for a couple of years, asking at least one person and sometimes two or three to rate me monthly. Not only did it help me to be more realistic, but it was also a good way to educate others about my CFS and for me to learn from their perceptions.)
Factors Affecting Improvement
The challenges you face may make your chances for significant improvement easier or harder than those of others. Here are some factors we think are important.
1) Severity of CFS or FM
The impairment from CFS or FM has a wide range. The average functional level of people entering our program is about 25% of normal, but some people are more limited than that while others have less severe cases. The bottom line for improvement: some climbs are longer than others.
2) Presence of Other Medical Issues
Some people have just one major medical issue: CFS or FM. But many have both conditions and/or one or more additional health issues. Some of the most common other medical issues include sleep disorders, orthostatic intolerance, food and digestive problems, migraine headaches, thyroid problems and clinical depression. The implication for improvement: It’s simpler to deal with one problem, more complicated to address several.
3) Financial Resources
The financial situation of people in our program varies considerably. Some, who have a spouse’s income to fall back on or who can retire with a pension, have situations similar situations as before they were ill. Others are less fortunate, with some struggling to live on disability. Having adequate money reduces stress as well as providing access to medical help, medications, adequate food and good housing.
People’s family situations differ as well. Some feel understood and supported, while others are challenged to have family understand and believe them. In addition, because CFS and FM are often severe, people with the two conditions can feel isolated. The level of support a person experiences varies greatly. Other people can provide practical help, understanding and encouragement; living without support creates challenges. Isolation forces people to do more for themselves and often leads to discouragement.
Predictability and routine are two factors that make improvement easier. The amount of stability varies from person to person. Some people with CFS and FM are able to live in one place over time and their family situations are stable. Others have to deal with several to many changes: one or more moves, the loss of important people in their lives, etc.
6) Adopting Self-Management
Taking responsibility for those things we can control is a big factor in improvement, perhaps the most important. How we live with CFS or FM can affect symptom level and even its course.
I remember one person in our first self-help group. She functioned at about 20% of normal or less at that point. She had many medical issues in addition to CFS, lived on disability, spent many days in bed and had little family support. She’s now at about 45% thanks, mainly to self-management. The last time I saw her we went on a two-hour hike.
Some factors may be out of our control, but we can affect others. We agree with our friend Dr. Lapp who says that those who do well share a positive attitude and a willingness to adapt.
We call this approach having realistic hope. It combines two apparently conflicting parts: acceptance and belief that improvement is possible. Acceptance means acknowledging that life has changed. Instead of living as if they were well or searching for a miracle cure to restore them to full health, people with this attitude accept that it is necessary to live differently, for now and perhaps for the long run. At the same time, they have a confidence that they can find ways to make their lives better.
Realistic hope is different from both resignation and from the search for something that restores a former level of health. Both of these other approaches often lead to helplessness. Realistic hope, in contrast, gives people a way to help themselves and to regain a sense of control.
* Brown, M. M., Bell, D. S., Jason, L. A., Christos, C. and Bell, D. E. (2012), Understanding Long-Term Outcomes of Chronic Fatigue Syndrome. Journal of Clinical Psychology, 68: 1028–1035.
Note: This article is reproduced with kind permission from www.cfidsselfhelp.org – which offers a large resource library on all aspects of coping with chronic illness.