What name is given to the disease?
According to the official web-site for the Danish Health Authorities the following synonyms are used: Neurasthenia, myalgic encephalopathy (ME), post-viral fatigue syndrome, chronic fatigue syndrome (CFS), idiopathic fatigue syndrome, systemic exertion intolerance disease (SEID). Recently, the term bodily distress syndrome, has been increasingly used by certain psychiatrists and general practitioners.
The diagnostic codes being used are:
"ICPC 2: A04 General weakness / fatigue; ICD-10: F48 Other nervous conditions, F480 Neurasthenia, G93 Other brain disorders, G933 Postviral fatigue syndrome, Z73 Problems coping with life, Z730 Burnout issues".
Estimated numbers of patients
According to prevalence approx. 14,000 - There are no national registers for ME.
According to public health data from the hospitals, the ME diagnosis was given 745 times in the period 1993 - 2011.
The ME Association has 800 members.
Status of recognition
Official view is that ME is a form of somatoform illness rom the official web-site for the Danish Health Authorities:
"Fatigue is a very frequent symptom, but most people recover without treatment";
"Chronic fatigue syndrome is associated with previous psychiatric disorders";
During treatment: "psychological treatment that focuses on the patient's thoughts on the condition".
Specialism used to treat ME
There are currently five regional centers being established focusing on “functional diseases: The centers are hospital based in a mixture of somatic and psychiatric departments, but the staff, the approach and "treatment options" are mainly psychiatric. No ME specialists are currently associated with these centers. Treatment options are primarily GET/CBT. From the official web-site for the Danish Health Authorities: "Graduated exercise therapy is a structured and guided physical activity that gradually increases the degree of endurance (aerobic capacity). The approach is scientifically well documented, and no adverse effects have been demonstrated in graded exercise therapy”
Average time before diagnosis
According to the Danish ME Association's member surveys, the time is approx. 9 years - often more. Some are never diagnosed. Very few doctors in Denmark know that ME is a biological illness, so most patients do not get an ME diagnosis The majority of patients will not get the diagnosis of ME in Denmark. Many doctors have never heard of it, and a growing number don’t “believe” in ME because they have been to one of Per Fink’s classes that teach that ME is a functional disorder. These classes are currently being taught to all medical students in some parts of the country, and the plan is to make the classes mandatory for all medical students. ME patients most often get a misdiagnosis of a functional disorder (somatoform illness, F48). They can also be diagnosed with stress, health anxiety or depression. Exercise is seen as a cure-all for every illness here. There is a handbook that tells doctors how to treat illness with exercise. ME is included in this guideline. The ME Association has requested that ME be removed from this guideline. It is currently up for review.
Yes (“Functional Diseases" published in June 2018), based on the abovementioned quotations.
Disability status of patients
According to the Danish ME Association's member surveys and contact with other Nordic ME Associations the disability is extremely high. Virtually no one is in full-time employment. Approximately 85% are on early retirement or in limited “flex-job”. Due to lack of early diagnosis, awareness of PEM and the recommended plan with GET – many are worsened during the first years of illness.
Clear divergence between public clinical practice classifying "chronic fatigue syndrome" as a functional disease and a classification of a somatic condition (ME) G93.3. Patients are stigmatized through handling in a psychiatric context and worsened due to lack of acceptance of PEM.