Frequently Asked Questions
Here are some frequently asked questions about ME.
Click on the links below to expand the information.
ME stands for Myalgic Encephalomyelitis.
Benign Myalgic Encephalomyelitis (ME, sometimes referred to as ME/CFS) is a
long-term, complex, multisystem,
acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal,
immune, endocrine and cardiovascular systems.
ME has been classified as a neurological disorder in the World Health
Organisation's International Classification of Diseases since 1969 (ICD 10 G93.3).
In the 11th Revision (ICD-11), ME is listed as an inclusion term under code 8E49 "Postviral fatigue syndrome",
which remains in the nervous system chapter.
ME is recognised as a serious, disabling condition that can substantially limit daily activities and quality of
life. Diagnosis is clinical, based on characteristic symptoms such as persistent fatigue,
post-exertional malaise, unrefreshing sleep and cognitive difficulties, with exclusion of other causes.
The Chief Medical Officer's Report on the subject of CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis)
issued in
January 2002 recognised that "CFS/ME should be classed as a chronic condition with long term effects on health,
alongside other
illnesses such as multiple sclerosis and motor neurone disease
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.
Management focuses on symptom relief, pacing and tailored support.
Other Links:
History and Classification of Myalgic Encephalomyelitis
Anyone can develop 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 recent cited prevalence figure is ~400,000+ of which 25% are children. Though recent estimates go above 450,000 - and many cases of Long Covid (which can share similar symptoms) has now also being viewed as ME, making official numbers soar in recent years.
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
As the cause of ME is unknown and it often follows an infectious episode with relapsing and remitting nature patients with a diagnosis of ME/PVFS/CFS are permanently excluded from donating blood. This applies to even those patients who say they have recovered. http://www.transfusionguidelines.org.uk/dsg/wb/guidelines/ch013-chronic-fatigue-syndrome
Diagnosing ME can be a challenging process as there is no single laboratory test yet available to prove or rule out ME. A careful history taking is important and if the symptoms or test results are attributable to another active disease process ME should be ruled out. Conditions such as major depressive disorder, MS, eating disorders, bipolar disorder, thyroid disorders, Addison's disease and some cancers for example can present themselves with symptoms such as fatigue, sleep disturbance, pain and cognitive problems and should be ruled out before a diagnosis of ME is made. If another active disease process is well under control and the patient still has symptoms that fulfil ME criteria then an ME diagnosis can be made.
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