Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a condition surrounded by misunderstanding and confusion. This year, Chronic Fatigue Syndrome Awareness Day is once again working hard to educate patients, families, and the general public on the different ways that chronic fatigue syndrome can impact daily life. Scheduled to coincide with the birthday of Florence Nightingale, this year Chronic Fatigue Syndrome Awareness Day spans the week of May 11-17th.
Unless you or someone you love is diagnosed with chronic fatigue syndrome, it can be very difficult to comprehend what it is. CFS is characterized by fatigue that lasts for more than six months, but fatigue is not the same thing as being tired. Tiredness often has a clearly traceable cause, such as extra hours at work or caring for a newborn. In addition, chronic fatigue is usually not relieved with rest and often worsens with physical or mental activity. While diagnosis can be challenging, the following are symptoms that go beyond fatigue:
- Difficulty remembering things or concentrating (brain fog similar to fibromyalgia)
- Sore throat
- Muscle pain not caused by physical activity
- Sleep that is not restful
- Swollen lymph nodes
- Pain that migrates from one joint to another
- In people with headache, new headache patterns
- Extreme exhaustion after physical activity, sometimes not arising until days later (known as post-exertional malaise)
As these symptoms can be present in a number of illnesses, diagnosing chronic fatigue syndrome is often about eliminating other conditions first. There are a few identified potential causes of CFS.
- Immune systems issues: People with issues in their immune systems have a higher prevalence of chronic fatigue syndrome.
- Viral infections: Viral infection such as Epstein-Barr may be one cause of chronic fatigue syndrome.
- Hormonal imbalance: Imbalances in the pituitary and adrenal glands and the hypothalamus are sometimes observed in those with chronic fatigue syndrome.
As with all chronic conditions, there are several factors that can increase the risk of developing it. People in their 40s and 50s seem to be more likely to develop CFS, and women are diagnosed more often than men. Stress plays a part in this condition as well. This includes both level of stress and the ability to manage it.
Because chronic fatigue syndrome can be debilitating to daily life, conditions such as depression, anxiety, and social isolation may develop along with chronic fatigue syndrome symptoms. People with this condition may find that they need to restrict or change their lifestyle to accommodate anticipated fatigue.
This change in lifestyle can include changes to exercise, and this can make chronic fatigue syndrome worse. Those with chronic fatigue syndrome may stop physical exertion because they know it may worsen chronic fatigue syndrome symptoms days later. New research clearly indicates that if this anticipation of negative consequences is eliminated, exercise combined with cognitive behavior therapy may actually be an excellent treatment approach. 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 examined three approaches to treating CFS.
- Cognitive behavior therapy (CBT): Counseling to change the way a patient thinks about their condition and its effects
- Graded exercise therapy (GET): Therapy that includes an exercise program that gradually increases in intensity and duration and is delivered by a physiotherapist
- Adaptive pacing therapy (APT): Patient-controlled exercise plan, adapting activity to their energy level
The researchers found the greatest reduction in symptoms came from CBT and GET combined. The reason for this may be that patient fear of increased pain is mediated through counseling and regular activity that builds gradually. Professor Chalder notes:
“Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with a graded approach to the avoided activity (as in GET). Clinically, the results suggest that therapists delivering CBT could encourage more physical activities such as walking, which might enhance the effect of CBT and could be more acceptable to patients.”
Other successful treatment approaches can include:
- Antidepressants: As depression is comorbid to chronic fatigue syndrome, some patients find relief with antidepressants. While this does not necessarily treat fatigue, it can improve patient mental outlook.
- Prescription sleeping pills: Again, this addresses a symptom rather than a cause, but there are times when sleeping medications are a useful way to combat difficulty falling and staying asleep. As with any chronic illness, there is the possibility of dependence, and all prescriptions should be used judiciously.
- Lifestyle changes: These can include reducing stress, getting gentle, graded exercise such as walking or yoga, and undergoing counseling as an individual or with a partner to help cope with the strains of the condition.
- Complementary medicine: Some patients find that acupuncture, massage, and t’ai chi help with the extreme fatigue and aches of CFS.
The effects of chronic fatigue syndrome can be debilitating for patients and their families. Treatments can also be financially stressful. As with any chronic illness, relationships can become strained between family and friends. It is important to get help and support, and there are many different ways to get involved in support of Chronic Fatigue Syndrome Awareness Day.
- Raise awareness by telling your story, sharing the stories of others, or spreading the word
- Raise money for research through walks, treks, and company donation drives
- Raise spirits by volunteering in support of Chronic Fatigue Syndrome Awareness Day
If you or someone you love is suffering from chronic fatigue syndrome, you are not alone. Find more information on support networks and treatment options on the CDC’s chronic fatigue syndrome information page.
Image by JamesGardinerCollection via Flickr