Chronic Fatigue Syndrome, ME/CFS for short, has not been very well studied to date and is therefore difficult to diagnose.
A quarter of those affected have difficulty leaving their homes due to severe pain and fatigue.
The causes of ME/CFS are still unknown. There is also no specific treatment. However, changes in daily life can help control symptoms better.
Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a serious condition that causes extreme tiredness and fatigue. However, it cannot be cured with sleep and rest. To this day, the disease remains a mystery to medical professionals. Until now, scientists have assumed that ME/CFS is both a neurological and immune system-dependent disease. It is also believed that the disease is often triggered by a seemingly unrelated bacterial or viral infection, which makes diagnosis difficult.
There are still no approved drugs in the fight against fatigue syndrome in the world. Treating physicians would therefore adhere to a protocol based on adapting the lifestyle of people with the disease in order to improve their quality of life, specifies Emily Taylor. She is Vice President of Advocacy and Engagement at Solve ME/CFS.
Learn more about ME/CFS and the symptoms of the disease here.
People with ME/CFS often have difficulty performing daily tasks. Even activities such as working or cooking are difficult for those affected because they do not feel capable of doing so due to permanent fatigue. In addition, nearly 25% of those affected cannot leave their homes. The result is a very poor quality of life.
Additionally, people with CFS are said to experience symptoms beyond just fatigue, says Medhat Mikhael, a pain management specialist and medical director of the nonsurgical program at MemorialCare Orange Coast Medical Center’s Spine Health Center.
These symptoms can come and go, and sometimes even get worse over time:
- Extreme fatigue, even after adequate sleep
- Sleep disturbances, including insomnia, regardless of how tired you are
- Brain fog and difficulty thinking or concentrating clearly
- Pain, including headaches and joint pain
- Orthostatic intolerance, which can cause dizziness, weakness, or fainting when standing or sitting
- Other symptoms that worsen after physical or mental activity
The German Society for ME/CFS estimates that there are almost 250,000 people affected across Germany, although the number of unreported cases could be much higher. About 17 million people worldwide suffer from pathological fatigue. Since the diagnosis, unlike other diseases, is relatively difficult to establish, the researchers assume a higher number. To date, there is no definitive test for ME/CFS, so the symptoms are often confused with other autoimmune, mental health, or nervous system disorders. They include:
Additionally, doctors are often unfamiliar with ME/CFS, which makes it difficult for patients to receive a diagnosis, says Jacob Teitelbaum, internist at Vitality101. “CFS is no more a mental illness than it is cancer,” he says. “Unfortunately, over the last century, some doctors have had a habit of telling people, ‘I don’t know what’s wrong with you, so you’re crazy.'” Teitelbaum adds that this “prolongs the treatment and creates deep anxiety that can trigger”.
Because ME/CFS is so complex to diagnose, there is little information about who is most affected. The German Society for ME/CFS states that while all age groups can be equally affected, adolescents and young adults up to their mid-thirties would be most vulnerable.
However, the numbers become more striking when you take a closer look at the genders involved. It should be noted that women suffer much more often from ME/CFS, namely three times more often than men. Additional research shows that people diagnosed with ME/CFS have recently acquired an infection. Therefore, infections are considered as one of the causes. In addition, childhood trauma is considered another risk factor.
Although neither the cause nor the mechanism of ME/CFS is fully understood, Teitelbaum says research suggests that a “circuit breaker” was triggered in the hypothalamus in patients. This area of the brain produces hormones that control vital bodily functions like heart rate and hunger, libido and sleep.
|To note: People with Long-Covid could develop ME/CFS-like symptoms. 46% of those affected meet the requirements for this. However, medical professionals are still trying to explore a potential connection.|
Keep symptoms under control
There is still no cure for ME/CFS, but some manage to control symptoms largely through lifestyle changes. However, you should be aware that battling ME/CFS is a long road of trial and error. Doctors usually try to fight the most noticeable symptoms. These include:
Post-exercise sickness (PEM) occurs when symptoms worsen with even minimal physical or mental exertion. To get PEM under control, doctors recommend slowing down. The US Department of Health describes this as learning to balance rest and activity to avoid PEM flare-ups.
|Important: Exercise can make symptoms of ME/CFS worse, so you should always consult your doctor first. This will ensure that you don’t over exert yourself and trigger other symptoms.|
Sleep disturbances are very common among those affected. The first step to fighting insomnia is establishing a healthy sleep routine. You must learn to always go to bed at the same time and not to use any media (cell phone, television, laptop) before going to bed.
Insomnia treatments including cognitive behavioral therapy, short-term sleeping pills, and mindfulness can also help. Treating other symptoms, such as pain, can help people fall asleep and stay asleep.
People with ME/CFS often complain of pain affecting the whole body, but particularly the joints. Doctors often try to help affected people deal with the pain through activities such as yoga or stretching exercises. Methods such as acupuncture or massages are also experimented. Well-known medications such as aspirin or ibuprofen can also help with pain relief.
However, if the pain gets worse, your doctor can refer you to a pain therapist. These can help you change your daily life in a way that makes it easier for you to deal with pain.
Stress, anxiety and mental health
People with ME/CFS are more likely to develop problems such as mood swings, anxiety or depression. Scientists are still trying to determine if a biological mechanism is playing a role or if the general challenge people feel when performing simple tasks makes them more vulnerable to depression.
Treatments for mental health problems associated with ME/CFS include mindfulness and tranquilization therapies, as well as medication for depression and anxiety.
People with ME/CFS also report that a generally healthy lifestyle has helped them. This includes a balanced diet and more conscious mental health care.
Teitelbaum recommends the SHINE protocol. This was designed to help people with ME/CFS and Fibromyalgia. This is a comprehensive set of lifestyle adjustments and medical interventions:
- Sleep: The protocol recommends sleeping at least 8 to 9 hours a day to combat insomnia, with medication if needed.
- hormones: The protocol tries to stabilize hormones, and medications to treat thyroid disorders should also help.
- Infections: The protocol is designed to detect, control and prevent infections ranging from yeast infections to viral illnesses.
- Nutrition: This is a balanced diet plan to combat potential nutrient deficiencies.
- Sports: After about ten weeks of the program, patients must gradually increase their sports activities under observation.
|To note: A small 2011 study by Teitelbaum found that people with ME/CFS and fibromyalgia had better outcomes after following the protocol. The results held up when the researchers followed up almost two years later.|
Chronic fatigue syndrome is a condition that causes extreme fatigue, mental derangement, and general pain throughout the body.
If you suspect you have ME/CFS, or have been recently diagnosed, finding a doctor familiar with CFS can improve your outlook, Teilbaum said. “It’s a complex disease and you need a doctor who understands it,” he says.
This article was translated from English by Meltem Sertatas. You can find the original text here.