ME/CFS is an abbreviation for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. First, let's see what this complicated word actually means.

• My- is the Greek prefix when it comes to musculature
• -Algic from Greek. algos = pain
• Encephalo- is derived from the Greek word encephalon = brain
• -myel- from the Greek word myelon = (back) mark
• -In medicine, itis usually refers to inflammation

Basically, the name “myalgic encephalomyelitis” means a painful inflammation of the muscles and central nervous system. It is a chronic disease with fatigue, cognitive impairment, sleep disorders and post-exertional malaise. You'll find out exactly what that is in the course of this article. There are around 250,000 people affected in Germany. ME/CFS is most common between the ages of 11-19 and 30-30 years. Women are affected approximately twice as often as men. A prevalence of around 1% is assumed worldwide. This means that around 70-80 million people worldwide suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, an estimated 84 to 91 percent of patients have not yet been diagnosed. At least 25% of patients are bedridden or homebound and up to 75% can no longer work or attend school.

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Hypotheses on the origin of ME/CFS

There are various hypotheses as to the origin of the disease, but it is not yet possible to determine this with certainty. In approximately 50% of cases, the disease occurs acute after an infectious disease on. However, other triggers are also known, such as:

• surgeries
• pregnancy
• Psychosocial stress
• traumas
• Possible viral triggers, including Epstein-Barr virus (glandular fever), cytomegalovirus, human herpes viruses

Since the disease so frequently occurs following a viral infection, many researchers assume that viruses survive within the body, which triggers chronic inflammation. However, this is not a new phenomenon. Something similar is also known from other diseases, such as herpes viruses, which can lead to shingles years after the infection.

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There are 3 hypotheses as to the origin of the disease:

1. Chronic infection
   The hypothesis is that a viral infection causes viruses to survive in the body. These in turn activate the immune response. The result is chronic inflammation.
2. mitochondrial disorder
   Mitochondria are found in all our cells and are, so to speak, the cells' energy suppliers. The viral infection causes changes in the metabolism of the mitrochondria. Mitochondria no longer function properly and can no longer convert sugar into energy. If the muscles now have to work without having enough energy available, this quickly leads to severe exhaustion.
3. autoimmune disease:
   An existing immune deficiency means that the body cannot completely destroy the virus in the event of an infection. The result is an existing autoimmune reaction.

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What are the symptoms of ME/CFS?

The symptoms of ME/CFS are varied. However, the focus is on chronic exhaustion with post-exertional malaise (or also: crashes), sleep disorders, cognitive difficulties and pain.

The three main symptoms of ME/CFS are: chronic exhaustion (lasting longer than 6 months), sleep problems and the so-called post-exertional malaise, or PEM for short. But what is that exactly?

With PEM, physical and mental activity can lead to complete exhaustion and worsening of further symptoms after a few hours to days. This phenomenon is also often referred to as a crash, as it results in severely reduced performance in everyday life.

In addition, the following complaints may occur to varying degrees:

Neurocognitive symptoms (“Brain Fog”)

• memory disorders
• concentration disorders
• Word finding disorders
• disorientation

soreness

• muscle and joint pain without local signs of inflammation
• headaches

orthostasis intolerance (circulatory problems when getting up)

Neurological symptoms: Hypersensitivity to stimuli such as light or sound

Immunological symptoms, e.g. new allergies or food intolerances

weight gain or loss

Psychiatric symptoms, such as anxiety, emotional instability, and depressive symptoms

Due to the various symptoms, this list only covers the most common complaints and does not claim to be exhaustive.

By the way: Even in the context of long Covid, symptoms similar to those of ME/CFS are often observed. Researchers therefore suspect a similar origin of long Covid and ME/CFS.

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Exclusion diagnosis

Since no biomarker has yet been identified, ME/CFS is a clinical exclusion diagnosis: If no organic or psychiatric cause can be identified for the above symptoms, the diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome is an option. This can mean a long journey of suffering on the part of patients, as they must first undergo a wide variety of examinations. In addition, many patients are met with incomprehension by the treating doctors. Since there are no suitable diagnostic tests yet, the treating doctors are not yet finding a physical cause. This can mean that the complaints of those affected are not taken seriously.

Diseases that have similar symptoms and should therefore be clarified before diagnosing ME/CFS include:

• anemia, malignancy, or infection
• depression
• Electrolyte deficiency
• diabetes or malnutrition
• hyper- or hypothyroidism
• iron deficiency
• hepatic dysfunction
• renal dysfunction

There are clinical diagnostic criteria according to which the diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome is made. The most recent criteria were set by the Institute of Medicine of the National Academies in 2015. The diagnostic criteria that must be met for an ME/CFS diagnosis are:

1. A significant limitation or inability to participate in professional and social life, personal activities, or education These symptoms persist for at least 6 months and are associated with (often severe) fatigue. These symptoms are new or not congenital, are not the result of excessive activity and cannot be significantly alleviated by recovery.
2. post-exertional malaise (marked and sustained intensification of all symptoms after minor physical or mental exertion) and
3. non-restful sleep

One of the following symptoms is also necessary for the diagnosis:

1. Cognitive problems
2. orthostatic intolerance (circulatory problems when standing up)

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ME/CFS treatment

To make a long story short: There is no reliable treatment for ME/CFS. There are no medications that help reduce fatigue. Basically, you practice symptom-oriented therapy, i.e. administer painkillers for pain, etc.

The most important Therapeutic goal Is that Avoiding post-exertional malaise (PEM), i.e. crashes. This has led to the concept of Pacing than helpful proven. In doing so, patients learn to divide their energy according to their individual load limit.

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synopsis

ME/CFS is a nervous system disorder whose cause is largely unclear. It may occur as a result of viruses remaining in the body.
The main symptoms are fatigue with a sudden drop in energy, also known as a crash, and sleep problems. The remaining symptoms are varied. Therefore, other diseases must be ruled out before ME/CFS can be diagnosed.
Although ME/CFS has not yet been curable, symptoms can be treated. The focus is on preventing a crash. Pacing is a useful option for this.