Being constantly and profoundly tired without relief over a long period may indicate a serious condition that is often misdiagnosed in older adults. This article addresses what life is like for someone with chronic fatigue syndrome.
Fatigue is a common complaint that people often report to their doctors, and usually there is an identifiable cause. However, those who have been experiencing extreme fatigue accompanied by other symptoms for six months or longer may be suffering from Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME).
Chronic fatigue syndrome is a debilitating and complex idiopathic disorder characterized by extreme fatigue that is not improved by bed rest. It can’t be explained by any medical condition, and there is no single test to confirm a diagnosis of CFS.
For people living with CFS, being fatigued is much more dramatic than just feeling tired. The exhaustion they experience can’t be relieved by rest or managed by a change in diet. And people with CFS are often unable to carry out their activities of daily living.
What demographic is affected by CFS? Typically, it can occur at any age, and although it is most prevalent among those thirty to fifty years of age, it also presents in people over fifty. Older CFS patients demonstrate very different disease characteristics and symptoms than younger patients, and are more severely affected. Differing underlying issues and the physiological aspects of aging have a greater impact on older patients. It is a disease that’s too often misdiagnosed in older adults.
In an interview published by Phoenix Rising (Ellis 2013), a nonprofit organization supporting people with CFS/ME, Julia Newton, Ph.D. clinical professor of aging and medicine at Newcastle University in England, talked about whether CFS in older adults is different from CFS in younger people.
“I don’t think anyone has ever thought to look at that before. The thing that is very novel about this cohort is that, rather than just comparing old to young, in which case you might have difficulty with the older people having had the disease longer, the research matched each older CFS patient to a younger patient who had had the disease for the same length of time. So what this takes away is the possible conflict of length of disease which is often something I get challenged about (deconditioning). What was revealed was that the disease may be slightly different in older patients and that they had a slightly different pattern of autonomic nervous system abnormalities. So we have emphasized that CFS can present for the first time in older people and that the pattern of the disease may also be different.”
A Classic Face of CFS
Now in her sixties, Wilhelmina Jenkins has lived with the disease most of her adult life. A widely regarded spokesperson and face of CFS, she has shared her personal story before national organizations, research and nonprofit groups, and Congressional and public policy briefings about her experience living with CFS. She appeared on a segment of the Oprah Winfrey show about diseases that doctors miss or misdiagnose the most. In 1983, Jenkins was a mother of two, and a graduate student working on her Ph.D. at Howard University, when she began to feel unwell. The original diagnosis for the profound fatigue she experienced was Epstein-Barr syndrome. As symptoms worsened, she somehow persisted until she was finally diagnosed with CFS. Her life was forever changed.
Jenkins grew up in Washington, D.C. where her mother was a chemist at the National Institutes of Health. Jenkins’ intellectual prowess was evident from an early age—she was a Presidential Scholar and valedictorian in high school, among other distinctions.
A CFS networking activity published in 2009 on the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association’s Facebook page as “25 Random Things about Me” includes Jenkins’ comments about living with CFS: “If you don’t have any idea what it feels like to have CFS, think of the worst flu you’ve ever had. Think about feeling that bad every day. Every day for a month. Every month for a year. Every year for a lifetime. Recovery is tough to define and most people report that even after they recover, they have very narrow limits they must function within.”
In1995, Jenkins testified at a Congressional hearing to bring awareness to public-policy makers. Her comments were included in the Congressional Record, May 12, 1995.
“Americans of every age, race, and gender are living with the devastation of chronic fatigue and immune dysfunction syndrome. This illness, which robs us of our independence, our sense of self, and our control over our bodies and our lives, truly must be seen as a national crisis. Today I am totally disabled. I have been completely unable to work. I am incapacitated by an array of symptoms of which ‘fatigue’ is only a small part.
For me, the cognitive dysfunction, which accompanies this illness has been the most heartbreaking. Now I am often unable to read the simplest books, and, even when I can read, I may forget the content of what I have read almost immediately.
Although my own experience with CFS has been difficult, nothing could have prepared me for the shock when my daughter developed CFS at the age of fourteen.”
I met Jenkins for the first time in 2012 in Massachusetts, although I’d known about her for more than fifty years. She had traveled there from Georgia for her niece’s wedding. It was during those several days that wrapped around the wedding festivities that we came to know each other. She knew about my practice as a geriatric care manager, and our conversations turned to aging.
My questions opened the door to extended discussions about CFS. It happened that Jenkins’ daughter-in-law, K. Kimberly McCleary, the former president and CEO of the CFIDS Association of America, was also there and shared much information about CFS. For example, someone with CFS, and especially older adults, can easily be misdiagnosed as having mild cognitive impairment, dementia, or some form of Parkinson’s.
Jenkins was first diagnosed with Epstein-Barr, which until recently has been better known and understood than CFS. Epstein-Barr, like CFS, has a relatively short research life and was only discovered as a virus in the 1960s (Epstein et al. 1964).
Jenkins explained the difference between Epstein-Barr and Chronic Fatigue Syndrome and the best way to distinguish CFS from other conditions with similar symptoms. This included what is called post-exertional relapse or post-exertional malaise. The CFIDS Association defines this condition, which affects the majority of people with CFS, as an exacerbation of symptoms following physical or mental exertion, with symptoms typically increasing twelve to forty-eight hours after activity and lasting for days or even weeks. Post-exertional malaise and exercise intolerance, though not unique to CFS, may help to distinguish CFS from other disorders.
The malaise returns even after limited physical activity such as shopping or cooking, or mental exertion like reading a book or writing a check.
In spite of her “good and bad days,” Jenkins’ advocacy continues. She speaks to groups throughout the U.S. when she is able. She attends church when she is able, and is the area contact for a support group in Georgia. But when she expends energy she has to build in time to recharge. Hers is very different from the average person’s recuperation time. She never knows how a physical or mental activity will affect her. She just expects that it will.
Basic Facts about CFS
Information about CFS is available from the CFIDS Association of America. The association focuses on education, research, and public policy. Founded in 1987, it is the largest organization dedicated to chronic fatigue syndrome and immune dysfunction syndrome.
The CFIDS website includes the informative “Ten Discoveries about the Biology of CFS” by Anthony Komaroff, M.D. (2007), a widely respected authority on the disease.
However, public awareness about CFS continues to be limited. Following are four basic facts to know about CFS:
- CFS is more than just being tired.
- The fatigue is not relieved by rest.
- Adult women are more likely to get CFS than men or children.
- No diagnostic test for CFS exists.
According to Jenkins, one of the worst aspects not often mentioned about CFS is isolation, “… a consequence of having a chronic illness that no one fully understands. It is a spirit-breaking illness. It is a heartbreaking illness,” she says.
The research continues, but so far there have been no positive results, and some that claimed success were false. In 2009, CFS received international attention when two scientists reported in a medical journal that a mouse retrovirus was present in a large number of people with chronic fatigue syndrome, suggesting a possible cause of the condition. However, further studies proved this was not the case. The New York Times (Tuller 2012) reported on what turned out to be a false claim, and the finding was officially discredited.
According to the CFIDS Association of America, CFS affects men, women, and children of all ages, ethnic, and socioeconomic groups. Current community-based surveys estimate that over 800,000 U.S. adults have the illness, yet only about 10-20 percent have been diagnosed.
The Centers for Disease Control and Prevention website says, “More than one million Americans have CFS. This illness strikes more people in the United States than multiple sclerosis, lupus, and many forms of cancer.
Irene V. Jackson-Brown, Ph.D., CMC, CSA is a certified geriatric care manager and founder of The Art of Eldercare in Washington, D.C. Her article, Chronic Fatigue Syndrome: When Being Tired Takes Over Your Life, was recently published on page 14 of the Spring 2014 edition of the CSA Journal.
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