The concept 'ME/CFS' is an abbreviation that stands for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
ME/CFS is a multisystem disease. Multisystem diseases are disorders that affect multiple body systems.
Post-exertional Malaise (PEM)
The most characteristic symptom of ME/CFS is post-exertional malaise, a worsening of symptoms after exercise. It is an abnormal loss of function. Even a small amount of physical or mental exertion can lead to an abnormal and severe increase in all symptoms. This 'crash' can occur immediately after the activity, or only hours or days later and has an abnormally long recovery. It may take days, weeks, or even years for the patient to recover from this crash and return to the same level as before the relapse. You can read more about PEM here.
Severe, prolonged exhaustion. This physical and mental exhaustion is disproportionate to the effort. This significantly reduces the activity level. The patient is no longer able to perform normal daily activities.
Various sleep disorders can occur, such as disturbed or unrefreshing sleep, low melatonin levels or delayed sleep phase syndrome (a shifted day/night rhythm).
A type of chronic headache that is often severe and persistent.
Pain in the muscles and joints
A radiating pain that can occur in all muscles and joints and is not a (logical) consequence of exercise.
Little or no tolerance for light, sound, touch, taste, vibration and odors. This causes a worsening of symptoms.
- orthostatic intolerance
- disruption of bladder function and/or frequent urination
- palpitations, with or without cardiac arrhythmias
- shortness of breath on exertion
- muscle weakness
- poor coordination when moving (ataxia)
- low blood pressure with neurological cause
- sensitive lymph nodes
- recurring sore throat
- recurring flu-like symptoms
- recurrent sinusitis
- susceptibility to viral infections
- longer recovery periods after infections
- general malaise
- food allergies
- hypersensitivity to medicines, chemicals or fragrances
- concentration problems
- short-term memory problems
- problems with information processing
- search for words
- problems focusing, blurred vision
- disturbed depth perception
- disturbances of the balance
- slowed thinking
- cognitive overload
- non-congenital dyslexia
- unsteady feeling when standing
- disturbed body temperature regulation, such as low body temperature or noticeably fluctuating body temperature
- sweat attacks
- recurring feverish feeling and cold extremities
- intolerance to heat and cold
- marked weight change, lack of or abnormal appetite
- loss of physical adaptability and worsening of symptoms with stress
- stomach ache
- bloated feeling in your stomach
- irritable bowel syndrome
- nutritional intolerances
Diagnosing ME/CFS is difficult. Unfortunately, to this day there is no test that shows that you have ME/CFS. The diagnosis can be made using diagnostic criteria based on the symptoms, pattern of complaints and physical examination. Other conditions that cause similar complaints must be excluded.
It can take a long time before a diagnosis of ME/CFS is made. This is because complaints can also occur with other conditions. General practitioners and specialists also often have little knowledge about ME/CFS, which makes it difficult for them to recognize the condition.
Unfortunately, there is no ME/CFS treatment yet that can cure the disease. There are no medications that cure ME/CFS. With therapy and medication you may be able to alleviate the symptoms somewhat. This can improve the quality of your life.
ME/CFS treatments are not aimed at tackling the causes of the disease, but focus on reducing the symptoms and learning to deal with the disease. Which treatments are effective varies per person.
Discuss all treatment options with your doctor and make a treatment plan together. It is important that treatments support each other and are not harmful. You are the one who ultimately decides. Trust yourself and choose a treatment plan that suits you best.
More information can be found here.