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
- Invest in ME Proposal for UK Centre of Excellence for ME
- IiMER Research Projects
- Declaration of Helsinki
- IiMER Biomedical Research Fund
- Invest in ME Conferences and Research Meetings
- Let’s do it for ME campaign
- CMO Report
- Gibson Report
- NICE Guidelines
- IOM Report
- European ME Alliance (EMEA)
- European ME Research Group (EMERG)
- European ME Clinicians Council (EMECC)
- European Federaton of Neurological Associations (EFNA)
- The PACE Trial
Invest in ME Research - an independent UK charity
Finding, facilitating and funding research into ME
What is ME
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.
>What is ME? What is CFS? >Guidelines for ME >IiMER Awareness Leaflet
Quick Links on IiMER Site
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HELP US FUND INVEST in ME RESEARCH CONFERENCES
The Invest in ME Research International ME Conferences are CPD accredited biomedical conferences which provide a platform for the latest information and biomedical research on myalgic encephalomyelitis. They attract the most renowned speakers from all over the world - and are valuable sources of education and information for healthcare professionals, doctors, nurses, researchers, ME support groups and people with ME. They provide an excellent insight into these areas and the issues currently facing the healthcare and ME patient communities. Our conferences and, later, our researchers' 'Colloquiums have been facilitating interaction and sharing of information between patients, researchers and clinicians since 2006.
The Invest in ME Research International Biomedical Research into ME Colloquiums began as a way of bringing together researchers from around the world in a round-table discussion of ME research and ideas. Over the years this has broadened to sharing of experiences, data and plans. The charity has now put in place the key building blocks to take ME research into the 21st century with high-quality biomedical research in world class organisations being performed by some of the best researchers. This is a basis for a strategy of international biomedical research which will hold far greater promise of creating proper funding and awareness of biomedical research into ME.
To see what has been performed please go to this link.
HELP US FUND RESEARCH and ADVOCACY
Donating to Invest in ME Research means that the donation will go towards one of a variety of activities which are part of our objective to build a foundation of biomedical research into ME.
IiMER does not pay any salaries so all funds are directed to where they can be used effectively to reach our objectives.
To see what has been performed over more than a decade please go to this link.
DONATE to the BIOMEDICAL RESEARCH FUND
The Biomedical Research Fund (BRF) provides a means to fund biomedical research into ME and avoid the constraints or influence of policies which do not focus on researching ME properly. In addition education is a major part of biomedical research. Students need to attend conferences such as ours, healthcare professionals need to have the latest research presented to them regarding ME and researchers themselves need to meet, network and establish working relationships with each other. Researchers must also begin sharing data and working in co-operation.
Our aim is to build sustainable and developing collaborations with translational biomedical research at the heart of all research. The Invest in ME Research Biomedical Research Fund will be used for the following -
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Biomedical Research into ME
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Education Regarding ME
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Conferences related to ME
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Expenses in Sponsoring Presenters to Speak at Conferences and Colloquiums
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Cost of sponsoring PhD students and postdocs performing biomedical research into ME
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Set up and running of ME Clinical services
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Assisting with equipment and other costs of researchers performing purely biomedical research into ME
Currently the focus of the BRF is mainly toward the research in the Centre of Excellence for ME project. If you would like to help in raising funds please contact us.
To donate to the Invest in ME Research "Can Do" biomedical research fund please use the links above.
HELP US FUND RESEARCH and ADVOCACY
Donating to Invest in ME Research means that the donation will go towards one of a variety of activities which are part of our objective to build a foundation of biomedical research into ME.
IiMER does not pay any salaries so all funds are directed to where they can be used effectively to reach our objectives.
To see what has been performed over more than a decade please go to this link.
DONATE to the GUT MICROBIOTA PROJECTs
The UK Gut Microbiota Research projects aim to find whether there is evidence of a leaky gut in ME patients, to test the hypothesis that ME is an autoimmune disorder originating in the gut as a consequence of altered intestinal permeability, to investigate whether the underlying causes of ME are related to the presence of specific virus populations within the gut virobiota, and aim to answer important questions concerning the role of the enteric phage/virome in ME .
These are research projects in the developing UK Centre of Excellence for ME.
To read more about the UK Gut Microbiota projects please go to this link.
DONATE for CENTRE of EXCELLENCE for ME
The Centre of Excellence for ME is a project proposed by Invest in ME Research to establish a hub for biomedical research into ME. Please support us
This link takes one to the C of E for ME site please go to this link.
DONATE for MEDICAL STUDENTS in RESEARCH into ME
The Centre of Excellence for ME is a project created by Invest in ME Research. Part of this project proposal is the inclusion of medical students who will intercalate during their fourth year of study and participate in the biomedical research.
To read more about the medical students in ME please go to this link.