EMERG - Frequently Asked Questions

What is ME?

Myalgic Encephalomyelitis (ME, sometimes referred to as ME/CFS) is a serious, acquired, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction (Institute of Medicine, 2015). Individuals with ME/CFS experience a range of symptoms including significant impairment in function, post-exertional malaise, sleep impairment, cognitive issues, pain, orthostatic intolerance, flu-like symptoms, sensory intolerance, gastrointestinal and genitourinary issues.

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 (WHO code 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 ICD-11, myalgic encephalomyelitis (ME) and chronic fatigue syndrome are classified under Chapter 8: Diseases of the Nervous System, within the code 8E49 Postviral fatigue syndrome.

To date there is no known and universally accepted, specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.
The cause(s) of ME are unknown, but many individuals with the disease remain ill after an acute infection with symptoms that persist for six or more months.
There is currently no universally accepted diagnostic test or approved treatment for ME.

Who gets ME?

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

How many people have ME?

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

What are the typical symptoms of ME?

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).

Is ME contagious or inherited?

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.

Can ME be cured?

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.

What medications and treatments are available?

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

Frequently Asked Questions

Frequent Asked Questions