Background to ME
The first clinically documented outbreak of ME in the UK, was at the Royal Free Hospital in
July 1955, where Dr Melvin Ramsay noted the symptoms that would lead to a definition of ME.
Historical figures such as Florence Nightingale are believed to have suffered with this
illness and mention of ME in medical literature goes back as far as the 1930's.
More recently, there have been national working groups that have published their reports (UK CMO Report 2002, The Gibson Report 2006, NICE guidelines 2007 and the USA Institute of Medicine (IOM) Report 2015) that have provided foundations for progress but these reports have not led to increased funding from the major funders such as the MRC in the UK and the NIH in the US and therefore most of the research being performed into ME worldwide has been funded by charitable organisations or been crowdfunded in various ways.
Effort needs to be made to change the way ME
is being treated and funded in the UK and Europe.
IiMER are founder members and current chair of the European ME Alliance,
an umbrella non-profit organisation of national European organisations
that has joined European Federation of Neurological Alliances (EFNA).
EFNA lobbies in Brussels on behalf of its members for better care and awareness of
chronic neurological conditions.
ME Statistics
There are estimated to be
~400,000+
people with ME in the UK
with about 25% classified as being severely affected,
i.e. bed- or house-bound.
Each sufferer
is possibly a member of a family society that provides care and support,
so for every sufferer there may be 2 or 3 other individuals affected by ME.
Lack of Data
The UK Government does not collect statistics on the number of ME sufferers or the extent of the effects on the individual and their families and carers. Although it is noted that the National Health Service (as Invest in ME Research has repeatedly pointed out to the Chief Medical Officer) could easily collect and correlate such data from GPs through existing systems, if they were interested in using this to define service requirements.
Definition Problems
ME in the UK has suffered from the lack of adoption of a clear clinical diagnostic tool, resulting in ME sufferers not being identified correctly. Instead ME has been confused with other conditions that cause chronic fatigue. This obfuscation has lead to the psychiatric lobby being able to diagnose ME sufferers with "somatoform" disorders, such as "Faulty Illness Belief.".
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.
Library of Articles
Different articles and information on ME available here.
Guidelines for ME
One of the basic problems with treatment of ME is the original diagnosis of the illness.
Invariably it is too late and the current environment in the UK means that diagnosis may cover a broad range of illnesses with similar symptoms which are brought together under one diagnosis - ME - a dead-end of a medical diagnosis by a medical community which cannot even agree on a name.
In order to establish correct and early diagnosis there needs to be a standard clinical diagnosis method used throughout the country. This area is currently clouded with up to four sets of diagnostic criteria being available for use.
Guidelines - what they are
When a doctor or paediatrician gives a diagnosis of myalgic encephalomyelitis then they do this currently by exclusion of other illnesses and by means of basic blood tests.
Diagnostic guidelines are meant to be a means to assist in diagnosis.
Another important distinction is between guidelines used for research and those used for clinical diagnosis. One may think these would always be the same.
Educational Material on ME
Improving Knowledge About Myalgic Encephalomyelitis.
The charity aims to advance biomedical understanding of Myalgic Encephalomyelitis by supporting evidence-based education.
ME Stories
A selection of stories and quotes from people with ME who describe life with ME. Click here
For Patients/Carers
The impact of Myalgic Encephalomyelitis (ME) on individuals and families is profound and enduring. For anyone new to ME, the early period - when diagnosis is uncertain or has just been made - can be critical in shaping long-term outcomes. Accurate knowledge during this time is essential for decision-making, particularly for parents of children with ME and for carers of those affected. Click here
Advocacy
Advocacy and Action for Myalgic Encephalomyelitis
Since 2006, Invest in ME Research (IiMER) has undertaken sustained advocacy to improve recognition,
research funding, and clinical care for people with Myalgic Encephalomyelitis.
Click here
Severe ME
Stories and quotes from people patients/carers who describe life with severe ME. Click here
For Policymakers
It is important for policymakers, the media and even the public at large to understand what myalgic encephalomyelitis is.
Here is information from the charity's web site to better understand myalgic encephalomyelitis.
Click here
Last Update December 2025