INFORMATION CENTRE



Information Overview

Invest in ME Research has, as an objective, to make a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals.

We aim to do this by concentrating our efforts on three main areas - funding for biomedical research into ME, education of healthcare professionals, the media and the public and lobbying for improvement in the treatment of people with ME and their families. We have no membership fees and try to offer as much as possible for free, or at cost price.

Our efforts are focused on setting up a UK Centre of Excellence for ME (click here) which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).

Together with an ever growing number of resourceful and dedicated supporters we are all working toward the goal of making a positive contribution to progress.

Information Tabs

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.

Invest in ME Research are determined 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 over 250,000 sufferers of ME in the UK (a ubiquitous figure that has not changed for many years and may well be a conservative estimate), with about 25% classified as being severely affected, i.e. bed- or house-bound. Each sufferer is a member of a family society that provides care and support, so for every sufferer there could 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 throughexisting systems, if they could be convinced that it was desirable to do so.

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)/Post Viral Fatigue Syndrome (PVFS) is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. ME/PVFS has been classified as a neurological disorder in the World Health Organisation's International Classification of Diseases 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.
The Chief Medical Officer's Report on the subject of CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) issued in January 2002 recognises 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.
Other Links: History and Classification of Myalgic Encephalomyelitis

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.

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

Invest in ME offer the following educational material on myalgic encephalomyelitis.

ME Stories

A selection of stories and quotes from people with ME who describe life with ME. Click here

References

  1. Invest in ME Proposal for UK Centre of Excellence for ME
  2. IiMER Research Projects
  3. Declaration of Helsinki
  4. IiMER Biomedical Research Fund
  5. Invest in ME Conferences and Research Meetings
  6. Let’s do it for ME campaign
  7. CMO Report
  8. Gibson Report
  9. NICE Guidelines
  10. IOM Report
  11. European ME Alliance (EMEA)
  12. European ME Research Group (EMERG)
  13. European ME Clinicians Council (EMECC)
  14. European Federaton of Neurological Associations (EFNA)
  15. The PACE Trial

Invest in ME Research - an independent UK charity


Finding, facilitating and funding research into ME

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Last Update April 2018