Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a chronic condition characterized by not only extreme exhaustion but also muscle aches and pains, inability to concentrate or focus, pain in the joints, and difficulty sleeping. This condition brings with it challenges from start to finish, including diagnosing the syndrome in the first place and then attempting to find successful treatment. Complicating this is the fact that many people (including some doctors) take a dim view of chronic fatigue syndrome and don’t quite trust that chronic fatigue syndrome is actually its own syndrome. They don’t understand that being tired because of a long work day or one night of bad sleep is not the same thing as chronic exhaustion exacerbated for days by something as small as brushing one’s teeth.
Fortunately, there is a growing body of research on everything from diagnosis to treatment that can help shed some light on this illness and help patients get the relief (and recognition) they deserve.
Starting with diagnosis, there are two studies that may have come closer to understanding potential causes of chronic fatigue syndrome.
While hormonal imbalances have long been suspected of contributing to the development of chronic fatigue syndrome, a new study published in Menopause, the journal of The North American Menopause Society (NAMS), found that early menopause may be linked more strongly than previously suspected. This link may explain why women are two to four times more likely to develop chronic fatigue syndrome than men, as well as why women in their mid-to-late 40s are most commonly affected.
This study followed 84 women diagnosed with chronic fatigue syndrome and a control group of 73 healthy women. Both groups filled out detailed gynecologic questionnaires. Some of the major findings include the following:
- The chronic fatigue syndrome (CFS) group was 12 times as likely to have pelvic pain not associated with menstruation
- Women with chronic fatigue syndrome experienced more missed periods and significant bleeding between periods than the control group
- Women with chronic fatigue syndrome were more likely to utilize birth control for reasons other than preventing birth, such as to regulate or correct irregular periods
- A significant number of women with chronic fatigue syndrome (66%) reported undergoing gynecologic surgery (most commonly hysterectomy), over twice the rate of the control group (32%)
- While the control group experienced early menopause at a rate of 33%, nearly twice that number of women with chronic fatigue syndrome reported early menopause, either as a result of hysterectomy or just naturally
Chronic fatigue syndrome has been linked previously to other gynecologic conditions such as endometriosis, but this is the first study to link it specifically to early menopause. And making this connection can lead to better treatment options. Says NAMS executive director Margery Gass, MD, NCMP:
“Being aware of the association of CFS and earlier menopause can help providers assist women in sorting out symptoms of CFS from symptoms of menopause.”
Just as the study above identifies hormonal imbalances as a potential specific cause of chronic fatigue syndrome, this next study shores up the evidence for CFS as a biological illness. There still remain some people who believe that chronic fatigue syndrome is largely psychosomatic, but researchers at the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health have found a clear biological indicator in the immune system. They found increased levels of cytokines in the blood plasma of patients who had autoimmune issues for less than three years. These cytokines have been associated with increased fatigue often found in patients with the Epstein-Barr virus (the virus responsible for mononucleosis).
The importance of recognizing that chronic fatigue syndrome is not “only in a patient’s head” cannot be underestimated. Says lead author Mady Hornig, MD, director of translational research at the Center for Infection and Immunity and associate professor of Epidemiology at Columbia’s Mailman School:
“We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn’t psychological. Our results should accelerate the process of establishing the diagnosis after individuals first fall ill as well as discovery of new treatment strategies focusing on these early blood markers.”
As these studies legitimize chronic fatigue syndrome as a biological disease, new understandings about how to approach treatment also follow.
An online survey conducted by American Autoimmune Disease Related Diseases Association (AARDA), a non-profit organization that focuses on patient advocacy, found a strong connection between autoimmune conditions and chronic fatigue. The nearly 8,000 respondents to the survey reported the following:
- Nearly all (98%) of the respondents reported experiencing fatigue, and 59% reported that it was the most debilitating symptom of their disease
- Sixty-eight percent said that this fatigue prevented them from completing everyday tasks
- Even though 87% reported they have discussed their fatigue with their doctor, 59% of those who discussed it with their doctors said that no treatment had been suggested or given for fatigue
Virginia T. Ladd, president and executive director of AARDA had this to say about the survey results:
“The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a ‘fuzzy’ symptom, it’s real. Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It’s time we bring more research funding to this issue to advance understanding and effective treatments for fatigue.”
While it is unclear from this study which came first for individual respondents (chronic fatigue or autoimmune disorders), it is clear from the additional responses that chronic fatigue syndrome can complicate treatment of concurrent conditions. It is also clear that when chronic fatigue goes untreated, the other conditions are less likely to improve.
Another study found that using cognitive behavior therapy (CBT) to address patient fears that exercise will exacerbate pain while still encouraging exercise with graded exercise therapy was a successful treatment option. Some chronic pain patients fear post-exertional malaise so much that it causes them to stop exercising altogether, but researchers led by Professor Trudie Chalder from Kings College London and researchers from King’s College London, Oxford University, and Queen Mary University of London studied the effect of counseling aimed at minimizing fear avoidance and found that this approach helped patients continue to exercise with less trepidation.
This fear is real, and the results are, too.
The University of Florida found that in chronic fatigue patients, the neural pathways that send pain signals due to muscle exertion may be working double time. When a person begins to exercise, muscles release lactic acid and ATP that may trigger the neural pathways that signal pain. For chronic pain patients, this signaling is much more sensitive and kicks in more rapidly than someone without chronic pain. Dr. Roland Staud, a professor of rheumatology and clinical immunology in the UF College of Medicine and the paper’s lead author says that:
“For most of us, at the end of strenuous exertion we feel exhausted and need to stop — but we will recover rapidly. However, these individuals tire much more rapidly and sometimes just after moving across a room, they are fully exhausted. This takes a toll on their lives.”
For some, these studies may be just the beginning of what it takes to change their perceptions of chronic fatigue syndrome. For others, it further confirms what they live with every day.
Image by Sodanie Chea via Flickr