Myalgic encephalomyelitis is better known as chronic fatigue syndrome. Abbreviated to CFS, myalgic encephalomyelitis is a complex and disabling disease.
Classified as a neurological disorder by the World Health Organization, it affects multiple body parts, including the brain, muscles, digestive, immune and cardiac systems.
Myalgic encephalomyelitis means pain in the muscles and inflammation in the brain and spinal cord. Scientists are starting to understand, identify, and map the biological changes in people with CFS but have not found a cure or preventative measure to avoid affliction.
Chronic Fatigue Syndrome is associated with:
- Sleep
- Cognitive function
- Immune, neurological, and hormonal systems
- Endocrine system
- Blood pressure
- Heart rate regulation
- Digestion
Chronic Fatigue Syndrome affects men, women and children of all ages, ethnicities, and socioeconomic backgrounds. It occurs in a statistically higher number of women, with around 80% of the known sufferers being female adults.
What Causes Chronic Fatigue Syndrome
Despite researchers identifying many biological abnormalities in people living with the disease, a specific cause has not yet been identified or established. The condition may be triggered suddenly by an infection, toxic exposure, anaesthetic, immunisation, or trauma such as a motor vehicle accident.
CFS may develop slowly over months or years or suddenly without an explainable reason for the cause.
CFS has officially been classed as a biological illness.
CFS is not caused by being medically unfit, hyper-fit, or having mental health issues.
Symptoms Of Chronic Fatigue Syndrome
The predominant symptom of CFS is called post-exertional malaise: an increase in symptoms and reduction in function after minimal physical or mental activity.
People with CFS have a different physical response to activity or exercise, including abnormal exhaustion after any physical or mental activity that would not previously have caused problems before developing CFS.
People with Chronic Fatigue Syndrome find basic activities take an enormous toll on their health. Things we take for granted, like a short stroll, or coffee with a friend that caused no problems before, become difficult or impossible to undertake after contracting CFS.
Chronic Fatigue Syndrome is a complex, multi-system, chronic illness with many symptoms. Not everyone will experience all of the symptoms; not all symptoms are required for a CFS diagnosis.
Common Chronic Fatigue Symptoms Include:
- Cognitive issues: problems with thinking, concentrating, memory loss, vision, clumsiness, muscle twitching or tingling.
- Disrupted sleep patterns and apnoea events
- Unexplainable, random pain or aches in the muscles, joints, or headaches
- Abrupt changes in blood pressure, feeling dizzy and turning pale.
- Heart palpitations, increased heart rate, shortness of breath with exertion or standing upright
- Allergies or sensitivities to light, smells, touch, sound, foods, chemicals, and medications
- Gastrointestinal changes such as nausea, bloating, constipation, diarrhoea or urinary problems, Tender lymph nodes and a flu-like feeling without having the flu
- Weight change extreme loss or gain
- Temperature sensitivity and an inability to cope with sudden temperature changes.
Symptoms of CHS may fluctuate, even from hour to hour and can change over a longer period, like months or years. It is helpful for friends and family to understand that people with chronic fatigue syndrome may have to cancel or change plans at the last minute.
Categories Of Chronic Fatigue Syndrome
There are four levels of severity when classifying chronic fatigue syndrome.
- Mild: 50% reduction in pre-illness activity
- Moderate: mostly housebound
- Severe: mostly bedridden
- Very severe: bedridden and needs help with basic activities, including nutrition and hydration.
The severity of CFS can fluctuate over time. A person with CFS could be at one level of severity now, and then their disease could either improve or deteriorate over time. For some patients, the condition can worsen significantly with no obvious cause. Other patients have a “fluctuating illness” where they have better and worse periods that last for hours, days, months or years. It is unclear why this happens or why the symptoms can vary drastically between the extremes.
For most people who contract CFS, it is a lifelong disease. A return to pre-illness functioning is rare. Some people may find their disease worsens over time, while others remain stable.
Chronic Fatigue Diagnosis And Treatment
There is no singular test to diagnose CFS. Doctors make a diagnosis by excluding all other illnesses that might be causing symptoms and following accepted diagnostic criteria. A person’s results from routine medical tests will often appear normal, but additional tests may show abnormalities.
For a diagnosis of chronic fatigue syndrome, the person must have the following three symptoms:
- Substantial reduction in functioning and persistent and profound fatigue for at least six months.
- Their fatigue is not the result of significant exertion and is not substantially alleviated by rest.
- The person cannot undertake the same level of activity before becoming ill.
Post-exertional Malaise
- Unrefreshing sleep.
- Diagnosis also requires at least one of the following two symptoms:
- Cognitive impairment: difficulty with memory, finding words, understanding etc.
- Orthostatic intolerance: symptoms like palpitations, sweating, dizziness, and nausea when standing that are reduced or eliminated when lying down.
It is important to note that these are not the only symptoms of chronic fatigue but the minimum needed to meet the diagnostic criteria.
There is currently no cure or evidence-based treatments for CHS. It is important to find a doctor who is sympathetic to CFS and will work with you to help manage your symptoms.
Remember that emotions use energy too. Times of stress or emotional upheaval will drain your energy, which will mean less energy is available for other things.
If you have overdone activity, exercise, or suffer a crash for any reason, decrease the activity level and rest more. Repeatedly overdoing it may cause a severe and long-lasting relapse, bringing with it a worsening of many symptoms and the condition itself.
Living with Chronic Fatigue Syndrome takes understanding and patience. A person with CFS can only manage their symptoms as they emerge and go into remission. No two days are the same and they are not malingering. Until there is a breakthrough in research CFS is still largely unexplainable and takes time to diagnose correctly. While people with CFS won’t return to living a ‘normal’ life, they can still enjoy a wonderful life with planning and patience.
