ME Myalgic encephalomyelitis, CFS, chronic fatigue syndrome 1.76/5 (37)

Last updated: 13 / 12 / 22
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CFS / ME, Chronic fatigue syndrome, Chronic fatigue syndrome ICD-10

Similar states: SFS / ME, Myalgic Encephalopathy (ME). Idiopathic Chronic Fatigue Syndrome (CFS), neurostasis.

Definition

Myalgic encephalopathy (ME) is also called "Idiopathic Chronic Fatigue Syndrome" (CFS) and chronic fatigue syndrome (Lancet, 2015). The condition is characterized by severe exhaustion/fatigue, concentration difficulties, reduced memory and other cognitive functions, sleep difficulties, exhaustion after exertion and thus affected ability to carry out normal daily activities. The condition is suspected earlier, but the disease is defined by duration over several months when other diseases are excluded (reference: Crawley E, 2018). Directorate of health (2015) recommend that children and young people be diagnosed by a paediatrician, while adults can be diagnosed by general practitioners. The rheumatologist's task is to identify symptoms of chronic fatigue syndrome and distinguish the condition from rheumatic diseases.

Disease Cause

The cause of the disease is unknown, but the condition is not perceived as one Autoimmune disease. It is assumed that several factors are important: Vulnerability (genetic, environment). Triggering factors include infections, injuries and mental stress. Research suggests that immune substances such as the cytokine interleukin-1 (IL-1) and the neurohormone hypocretin-1 (the "wakefulness hormone") in the spinal fluid are important in fatigue (and narcolepsy), but clinical application of this knowledge in chronic fatigue syndrome is lacking (Bårdsen K, 2019).

The causes of ME are unknown. The cause is unknown, but is not thought to be systemic autoimmune connective tissue diseases or Vasculitis. The condition can thus be classified among MUPS (Medical Unexplained Physical Symptoms) (references: Richardson RD, 2004; Amland A, 2014).

Predisposing causes / vulnerability to falling ill include previous infections, injuries and mental stress. Research suggests that immune substances such as the cytokine interleukin-1 (IL-1) and the neurohormone hypocretin-1 (the "wakefulness hormone") in the spinal fluid are important in fatigue (and narcolepsy), but clinical application of this knowledge in chronic fatigue syndrome is lacking (Bårdsen K, 2019).

Occurrence

Prevalence: 0,2 – 0,4% among adults, which corresponds to 10-20.000 people in Norway. Most women. Rarer in children. The incidence (new cases annually per 100.000 inhabitants) in Norway (The Norwegian Institute of Public Health) is estimated at 39,4/100.000 among women and 12,9/100.000 among men. The disease is most common in the age groups 10-19 years and 30-39 years (Bakken IJ, 2014).

Symptoms

ME often has an abrupt onset, in some cases after an infection in the upper respiratory tract. Most typical is disabling exhaustion which covers work, studies, usual activities at home, leisure activities and social functioning. The exhaustion persists for months. Worsening is seen especially after physical or mental exertion. Despite sleep, one does not feel rested. Many people feel a fever, but without measurable symptoms (fever is a body temperature of at least 38,3 degrees). Impaired memory and concentration and others Cognitive difficulty is common. Some notice a sore throat, tender lymph nodes, muscle- og joint pain and "autonomic symptoms" in the form of inner restlessness (nervousness), trembling, sweating, palpitations, dizziness, stomach discomfort and dry mouth (reference: Nacul L, 2021).

Examinations

Medical history maps current symptoms (see above).

Klinical examination is directed in particular at symptoms and any suspected rheumatic disease. A rheumatological examination may include assessment of pain when moving joints or muscles, when pressing against muscles. Assessment of the heart, lungs, throat and stomach area, measurement of blood pressure and pulse, as well as lymph nodes may also be relevant. An indicative neurological examination is carried out if the nervous system is suspected to be involved. If one observes signs of other diseases such as dementia or other impairment of cognitive functions, the general practitioner can assess in more detail using the MMS (Mini Mental Status) or refer to neuropsychological examinations.

Blood tests may include CRP, SR, hgb, leukocytes with differential counts, platelets, liver, kidney and thyroid function tests, glucose, cholesterol (total, LDL, HDL), electrolytes, parathyroid hormone (PTH), creatine kinase (CK), IgG, IgM, IgA. Antibodies: CCP/ACPA, ANA with subgroups and and DNA, Lyme disease, acetylcholine receptor antibody (AChR), hepatitis B and C. IGRA Test (Tuberculosis). In some cases, cortisol is also measured (Addison's disease, morning value). Urine stitches are also checked.  

Imaging. MRI of the brain, neck/back is appropriate in some cases to rule out similar neurological disease.

Diagnosis

Set on the basis of symptoms and when other diseases are excluded. Often diagnostic criteria are used. There are several editions; the relatively short criteria prepared by the Center for Disease Control (CDC) criteria at Fukuda K, 1994 or the more comprehensive international consensus criteria from 2011 (Carruthers BM, 2011).

(CDC) criteria (1994) (reference; Fukuda K, 1994)

Main criteria - all must be met:

  • Medical unexplained fatigue
  • At least six months duration
  • New onset
  • Not related to current stress
  • Do not recover from rest
  • Reported loss of function

Additional criteria (must have occurred at the same time as the feeling of exhaustion) - at least four must be met:

  • Failing memory and / or concentration
  • Sore throat
  • Sore lymph nodes
  • Muscle pain
  • Pain in multiple joints
  • New headache
  • Lack of feeling rested after sleep
  • Worsened feeling of illness for at least 24 hours after exertion

For children and young people, the international consensus criteria from 2011 are recommended (Carruthers BM, 2011).

The diagnosis is based on persistent symptoms such as the following:
Obligatory symptoms:
-Reduced function
-Exhaustion after exertion
- Fatigue
In addition, two of the following three groups of symptoms are required:
1. Difficulty sleeping
2.Cognitive problems
3. Pain
The diagnosis is made if all the following criteria are present:
-The symptoms are persistent for six months (or three months after an infection) and that some symptoms are present daily and of moderate severity.
- Other diagnoses, including learning difficulties, must be ruled out by medical history, clinical examination and medical tests.
- The severity of symptoms is registered using a pre-defined scoring system.

Pregnancy by ME

A study suggests that deterioration, unchanged and improved condition are about equally common during a pregnancy. There do not appear to be more other pregnancy-related complications than expected from the rest of the population (reference: Typical RS, 2004)

Similar Conditions / Differential Diagnoses

It is important to be aware that most people with fatigue do not have ME/CFS, but more often symptoms caused by other conditions, emotional causes or lifestyle factors. Other conditions that can explain a similar form of exhaustion must therefore be excluded.

Treatment

Early mobilization with adapted, graded activity treatment/graded rehabilitation without overstimulation is recommended. Resting all day is not recommended. Bed rest for more than 4 weeks can cause immunological disturbances. If accompanying depression exists, this should be processed. Cognitive behavioral therapy for mobilization and better quality of life is relevant. Learning coping strategies can be important. Adapted stretching for muscles and joints combined with careful exercise or an activity program is useful. 

Specialist in Health Region South East

  • Oslo University Hospital at the ME / CFS Center has an interdisciplinary offer for adults (over 18 years) with Myalgic Encephalopathy (ME) / Chronic Fatigue Syndrome (CFS). The outpatient service covers the Health Region South-East in Norway. The admission to the ward is nationwide.

Medical prognosis

Data from good studies are lacking. Among adults, it is stated that 20 - 50% get better within 1-3 years. Among children, improvement is seen in 54 – 94% after 6 years (reference: Joyce J, 1997)

Literature

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