Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
What is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is complicated condition that causes extreme fatigue that lasts for at least six months. Symptoms get worse with physical or mental activity, but don’t fully improve after rest. Symptoms can come and go and can make it difficult for individuals to maintain a regular work schedule or even care for themselves. Often, people may get too weak to get out of bed or require a wheelchair during points of their illness.
ME/CFS most commonly affects young to middle-aged adults, and women are more likely to be diagnosed. People with a history of other complex medical conditions, such as POTS or fibromyalgia, may also be more likely to be diagnosed with ME/CFS. There is also a correlation between ME/CFS and joint hypermobility in adolescents.
What Causes ME/CFS?
The cause of ME/CFS is unknown, but experts think a combination of factors might be involved, including genetics, viral or bacterial infections, physical and/or emotional traumas, and energy use (difficulty converting fats into sugars). Those who have long COVID often meet the definition of ME/CFS. Researchers are studying whether the immune system plays a role in symptoms, as many people also have allergies, reactions to foods and medicines, frequent hives, and (occasionally) recurrent infections.
What are the Symptoms of ME/CFS?
ME/CFS symptoms can vary depending on the person, and the severity of symptoms can vary from day to day, but include:
- Fatigue
- Extreme exhaustion and physical exercise or mental activity
- Difficult with memory or thinking skills
- Dizziness that worsens when moving from laying down to sitting or to standing
- Muscle or joint pain
- Sleep that does not feel refreshing
- Tight areas of movement in the limbs and spine, including difficult with reaching arms overhead
- Palpitations, fast heart rate, fainting
- Headaches, sore throat, tender lymph nodes (for some people)
- Extra sensitivity to light, sound, smells and/or medicines (for some people)
How is ME/CFS Diagnosed?
There is no single test for ME/CFS. A provider will have to rule out many other health conditions including sleep disorders, other medical conditions that cause fatigue (e.g., anemia, diabetes, underactive thyroid), and mental health conditions. There are many overlapping symptoms between ME/CFS and fibromyalgia that some experts consider the two conditions to be different aspects of the same disease.
In order to be diagnosed with ME/CFS, guidelines from the U.S. National Academy of Medicine indicate that the associated fatigue must be:
- So severe that people are no longer able to do the same activities they were before becoming ill
- New or definite
- Not eased much by rest
- Worsened by physical, mental, or emotional exertion
In addition, a person would need to also experience at least one of the following symptoms:
- Difficulties with memory, focus, and/or concentration
- Dizziness that gets worse when moving from lying down or sitting to standing
Symptoms must last for at least six months and occur at least half the time at a moderate, substantial, or severe level.
How is ME/CFS Treated?
There is no cure for ME/CFS and treatments are focused on relieving symptoms:
- Pain – OTC NSAID medications are used first, then prescription medicine that are typically prescribed to treat fibromyalgia may be used (Lyrica, Cymbalta, amitriptyline, Neurontin)
- Orthostatic intolerance – when people feel faint or nauseated by sitting or standing upright, a medicine to regulate blood pressure or heart rhythms may be prescribed
- Depression – often individuals with ME/CFS also have depression and treating it can make it easier to cope with the disease itself. Low doses of some antidepressants can also help with sleep and pain.
- Pacing for postexertional malaise – symptoms worsen after activity and the associated fatigue can last for days or weeks. Pacing is done to reduce fatigue from exertion and an activity journal can be helpful
- Sleep issues – measures like avoiding caffeine and changing bedtime routines can be helpful, as well as treating any underlying sleep apnea
It can be difficult to know when is the right time to file a disability insurance claim for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS disability claims can also be difficult to prove-up, particularly because symptoms can be subjective in nature and can vary day by day.
If you have been diagnosed with ME/CFS (or suspect that you might have it) and are worried that it may be impacting your ability to safely practice, it is best to speak with an experienced disability insurance attorney before making any changes to your work schedule or duties.
These posts are for informative purposes only and should not be used as a substitute for consultation with and diagnosis by a medical professional. If you are experiencing any of the symptoms described above and have yet to consult with a doctor, do not use this resource to self-diagnose. Please contact your doctor immediately and schedule an appointment to be evaluated for your symptoms.
Sources:
Mayo Clinic
Johns Hopkins Medicine
Centers for Disease Control
