By Joanne P. Shelby-Klein BSN RN
Chronic Fatigue Syndrome (CFS) is also known as Myalgic Encephalomyelitis (ME) and affects 836,000 to 2.5 Million Americans (Institute of Medicine report) or about 2.8% of adults. These numbers may actually be higher because between 84-91% of the cases go unreported or undiagnosed.
It is more common in women than men with the average age of diagnosis of 33 years of age. A minimum of 25% of people who have CFS are bed bound or house bound because of the severity of the symptoms. High medical costs and the loss of productivity costs between $17 and $24 billion dollars annually and represents an economic issue for society as well as for the ill person.
WHAT IS CHRONIC FATIGUE SYNDROME?
Fatigue is defined as extreme tiredness or exhaustion, usually caused by a lot of physical or mental exhaustion. It develops over time and takes a period of rest to make it go away. Chronic Fatigue Syndrome or CFS is different.
The Merck Manual defines CFS as a life-changing fatigue that lasts 6 months or more and has a specific set of symptoms for which there is no known explanation for being present. Healthcare providers have known about CFS symptoms since the mid 1700’s although the Centers for Disease Control (CDC) did not provide a definition for the symptoms until 1988. The CDC also developed a list of symptoms, besides the fatigue lasting 6 months or longer, that identify CFS. 4 or more of the symptoms must be identified and present for the CFS diagnosis to be applied.
- Short-term memory is severely impaired
- The ability to concentrate or focus on subjects or tasks is severely impaired.
- Lymph nodes of the head, neck and underarms will be tender
- Muscle pain will be present
- Pain in multiple joints with no redness or swelling noticed
- Headaches that are new and may be severe
- Adequate sleep does not leave the person feeling rested
- After activity malaise that lasts more than 24 hours
- Inability to do normal daily activities and when attempted the person feels prolonged fatigue.
- Symptoms that become worse when the person stands up and improves when the patient lies down.
The vagueness of the symptoms, often resembling other conditions, has it sometimes known as the disease of exclusions, since other diseases must be ruled out.
WHAT ARE SOME OF THE CAUSES OF CHRONIC FATIGUE SYNDROME?
The actual causes of CFS have not been clearly identified, however there is a belief that some infectious disease process affects the person, causes the immune system to remain active leading to the person having a prolonged period of fatigue. If the fatigue lasts longer than 6 months and affects the person’s cognitive ability, it is often labeled Chronic Fatigue Syndrome. Some of the proposed causes include:
- Epstein-Barr Virus
- Lyme Disease
- Candidiasis infection
- Diarrhea over a long period of time
- Upper Respiratory infections
CFS can be seen as occurring in close family members however it is not contagious or easily spread. There is some thought that there is a genetic link or tendency to get the disease. Although several studies looking at genetic evidence and relationships found that environmental factors also play a role.
Studies looking at the immune causes have shown that there is an increase in the natural killer cells present in the immune system. Interferon has also been found in patients blood and spinal fluids. Researchers have theorized that the immune system loses tolerance to certain receptors following an infection and helps to cause CFS.
There have been theories about infections as the cause of CFS. Researchers have looked at theories ranging from the cause of CFS being a virus chronically present in the blood (viremia) to a strictly psychiatric or mental illness. Studies have linked viruses such as Borna disease virus, parvovirus B19, glandular fever, Enterovirus, human herpes virus and infectious mononucleosis to CFS, though no one true cause has been found, as not all people who get these infectious diseases get CFS and not all people with CFS have these diseases present.
Scientists do agree that infections do play an important role in the cause of the disease as well as predicting how a person with the disease progresses over time.
Scientists have also looked at the neurological and mental/psychiatric causes of fatigue. Parents of children and teenagers with CFS are found to have high levels of mental stress and greater levels of emotional involvement than parents of children with pediatric illness.
They have also found that a history of abuse in childhood may play a part in the start, development and continuation of chronic fatigue.
Sleep may also play a role in the cause of CFS. Many patients with CFS have trouble sleeping and report sleep disorders when they meet with a healthcare provider.
The question of whether it is a cause or an effect of CFS remains unanswered. It is important to remember that fatigue and sleepiness can be a symptom of many mental illnesses including depression, anxiety and seasonal affective disorder (SAD). This is one reason why CFS can often be misdiagnosed and treated as depression or anxiety.
Here is a comparison of depression symptoms and CFS symptoms:
- People with depression feel better after any activity or exercise.
- People with CFS have their energy level and fatigue worsen after the minimal amount of exercise.
- People with depression may complain of inability to sleep or excessive sleep.
- People with CFS will complain of either excessive sleep or an unrestful sleep.
- People with depression blame their symptoms on psychological factors
- People with CFS blame their symptoms on something outside the body,
- People with depression will cope with their illness by do more activities and exercise.
- People with CFS cope with their illness are working to decrease stress, decrease activities and exercises.
- Patients with depression complain of little to no pain and are generally stronger than people with CFS.
- People with CFS complain of frequent or ongoing sore throats and/or enlarged head, neck and underarm lymph nodes.
WHAT TESTS CAN BE DONE TO DETERMINE IF IT’S CFS?
Lab tests will be performed to make sure that no other disease process is the cause of the fatigue. They will also be performed to help diagnosis the CFS, although there are currently no tests that are specific for CFS. Any abnormal test results found during the exam can be used in combination with other tests to define CFS in patients who have fatigue and cognitive problems.
There are a few basic panels of tests that are recommended to be done on all patients with fatigue. These include:
- A CBC or complete blood count including hemoglobin, hematocrit, white blood cell count and differential, as well as a platelet level. This checks for any type of anemia and infection or immune issues. Patients with CFS will have normal levels of all of the above.
- LFT’s or Liver Function Tests to see how the liver is functioning properly. The LFT’s are normal in patients with CFS.
- Thyroid Function Tests are done to see if enough thyroid hormones are being produce and used by the body. If thyroid levels are higher or lower than normal that may be causing the fatigue.
- ESR rate or erythrocyte sedimentation rate. This is used to see if any inflammation is present in the body. People with CFS will have extremely low ESR rates
- Serum Electrolyte Panel. This includes Sodium, Potassium, and Chloride levels in the blood.
- ANA level or Anti- nuclear Antibody level. This is done to see if the body has an immune disorder or has started attacking itself.
- Cortisol levels may be measured to see how the adrenal gland is working,
- Serum immunoglobulin levels are done. People with CFS have high levels of IgM and IgG coxsacivirus-3, humanherpes virus 6 and c. pneumoniae.
- Decrease in natural killer cells present in the blood.
Once the blood tests have been obtained they will be reviewed by the healthcare provider. If there is no sign of another disease process present other tests may be ordered as follows:
- CT scan to look for any other central nervous system causes. Patients who have CFS will have a normal CT scan with no abnormalities noted. If there are abnormal findings, the patient does not have CFS.
- MRI of the brain. The MRI of the brain will be normal if the patient has CFS. If there are abnormal findings seen then other causes of fatigue (such as Multiple Sclerosis) need to be explored.
- PET scan (Positron Emission Tomography) will show an abnormality of profusion in the frontoparietal and temporal regions of the brain if the patient has CFS.
HOW CAN CHRONIC FATIGUE SYNDROME BE TREATED AND MANAGED?
CFS has a significant impact on both the patient and the family. It is important to work with healthcare providers to find a treatment plan that helps manage the disease. A team approach that addresses not only the medical and biological concerns, but also the mental health and social issues is vital to managing the symptoms and cutting down on the impact to the patient and families life.
SYMPTOM TREATMENT AND SUPPORT
- Discuss with the healthcare team the symptoms and most problem areas so they know what is affecting the patient most and how it impacts their life.
- Work with a dietitian to discuss their normal eating patterns make sure they are eating a healthy, well balanced diet.
- Work with an occupational and physical therapist so that there is a balance of activities that focus on what needs done on a daily basis. Therapists can educate patients on safe, energy conserving ways to complete daily tasks.
- Patients daily functioning and management of symptoms can have up to 70% improvement when Cognitive Based Therapy (CBT) is included as part of the treatment plan. Studies have shown that CBT can improve the symptoms of fatigue, anxiety/depression and physical activity. However little to no improvement in brain function and quality of life was noticed in one study. Choosing a CBT therapist who has experience in CFS and understands that it as medical/biological illness as opposed to a mental disorder is recommended.
- Acupuncture for 4 weeks, in addition, to other treatments has been shown to improve the fatigue and other symptoms of CFS.
Exercise is important for people with CFS and may be the most challenging part of the treatment plan. People with CFS need to start at a very low level of exercise and increase slowly. Working with a physical therapist may be helpful in educating patients on how to begin, what exercises to do and how to safely advance.
Any period of exercise needs to be followed by a time to rest for exercise to be effective. Most healthcare providers recommend a 1:3 ratio exercise to rest. This means that for every 10 minutes of exercise there is a 30 minute rest period. Several studies have shown that fatigue has improved, ability to function with daily activities and depression/anxiety has improved with even small amounts of exercise.
Medications can be used to help manage the symptoms of CFS. Finding the medication that works for each patient can be a challenge leading to healthcare providers doing trial and error to see what works.
- Antidepressants are the medications used most commonly in treating CFS. Not all of them work in all patients.
- Clonidine was effective in increasing cortisol levels and made it easier for patients to have more energy when first planning a task.
- Hydrocortisone improved some biological functioning
- Fatty acid supplements were beneficial in one study
- Carnitine supplements have been effective in treating fatigue in cancer patients and patients on dialysis with a reduction in fatigue and inflammation noted.
Ampligen is one medication that is being studied as a potential treatment for CFS. However it has not been approved by the FDA as of March 2015 due to inconclusive evidence of effectiveness in 2 clinical trials. The manufacturer is in the process of re-applying for approval.
Chronic Fatigue Syndrome can be very difficult to diagnose and treat causing frustration for the patient and healthcare providers who seek to improve patients quality of life. Research is ongoing especially in the area of immune diseases, medications such as Ampligen and acupuncture. Communication between patient and healthcare provider is very important in treating this disease.
- Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Institute of Medicine Report. Released February 2015. Retrieved from URL: http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
- Gever, J. (2013, February). FDA Turns Down Chronic Fatigue Drug. Retrieved from URL: http://www.medpagetoday.com/Washington-Watch/FDAGeneral/37195
- Cunha, BA MD. Bronze MS, MD. (2015, February) Chronic Fatigue Syndrome. Retrieved from URL: http://emedicine.medscape.com/article/235980-overview
- Griffith, J. P., & Zarrouf, F. A. (2008). A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume It’s Depression. Primary Care Companion to The Journal of Clinical Psychiatry, 10(2), 120–128.
- Jackson, ML PhD , Bruck, D PhD. Sleep Abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review. Journal of Clinical Sleep Medicine. Volume 8 #6. Retrieved from URL: http://www.aasmnet.org/jcsm/ViewAbstract.aspx?pid=28736
- Twisk, F. N. M. (2014). The status of and future research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: the need of accurate diagnosis, objective assessment, and acknowledging biological and clinical subgroups. Frontiers in Physiology, 5, 109. http://doi.org/10.3389/fphys.2014.00109
- Gluckman, S, MD. Chronic Fatigue Syndrome. Merck Manual Professional Version. Retrieved from URL: http://www.merckmanuals.com/professional/special-subjects/chronic-fatigue-syndrome/chronic-fatigue-syndrome