Frequent Asked Questions
A list below of common questions concerning myalgic encephalomyelitis (ME) and the European ME Research Group
ME stands for Myalgic Encephalomyelitis.
Myalgic Encephalomyelitis (ME) is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune,
endocrine and cardiac systems.
ME has been classified as a neurological disorder in the World Health Organisation's International Classification of Diseases under Postviral Fatigue Syndrome (PVFS)
since 1969 (ICD 10 G93.3).
Since 1992, the term "Chronic Fatigue Syndrome" (CFS) has been included in the Alphabetical Index and indexed to G93.3
In WHO ICD 11 the classification code will be 8E49 Postviral fatigue syndrome and this includes Benign myalgic encephalomyelitis and chronic fatigue syndrome
To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.
Anyone can get ME. It is more common in women than in men. In children the ratio between boys and girls tends to be the same up until puberty after which time it is more common in girls than in boys. However, epidemiological data is lacking and further difficulties in assessing the research data is the use of at least five different criteria for research or diagnosis (CDC, Oxford, NICE, Canadian Consensus (GCC) and International Consensus Criteria (ICC)) all purporting to study patients with a diagnosis of ME, PVFS , ME/CFS or CFS. Further Information: click here
Estimates vary between 0.11% and 2.6% of the population depending on the criteria used. In the UK the most often cited prevalence figure is 0.4% or 200 000 to 250 000 people of which 25% are children.
See also meinEurope.shtml
Symptoms include overwhelming post-exertional fatigue from mental or physical activity; dysfunctional sleep; pain; problems with memory; sensitivity to light, touch and sound; problems with standing and balance; problems with body temperature and weight; and recurrent flu-like symptoms; that persist for at least six months in adults; or three months in children (Carruthers et al, 2003).
There have been several documented outbreaks of ME but evidence of person to person transmission is lacking. ME is more common in some families pointing to a genetic component but there is no evidence of ME being inherited as such.
Currently there is no cure for ME. Treatment is based on managing the condition and providing symptom relief. Advances in treating and understanding ME are made every year, and progress in research to find a cure or effective treatments is very encouraging.
There are no MHRA (Medicines and Healthcare Products Regulatory Agency) or FDA (U.S. Food and Drug Administration) approved drugs
to treat ME yet.
Treatment is based on managing symptoms and avoiding over-exertion.
Patients find pacing mental and physical activities most beneficial.
Drugs such as Ampligen and Rituxan have been trialled but they have not proven to be successful.
http://www.fda.gov/drugs/newsevents/ucm337759.htm
http://clinicaltrials.gov/ct2/show/NCT02229942?term=rituximab+me%2Fcfs&rank=3