FAQs for Centre of Excellence

Frequently Asked Questions

Here are some answers to questions about a Centre of Excellence for ME -click on the links below to expand the information about each question.


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. http://www.biomedcentral.com/1741-7015/9/91 http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

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 of their mental and physical activities most beneficial. Drugs such as Ampligen and Rituxan are being trialled in ongoing studies. http://www.fda.gov/drugs/newsevents/ucm337759.htm http://clinicaltrials.gov/ct2/show/NCT02229942?term=rituximab+me%2Fcfs&rank=3 www.ukrituximabtrial.org

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.

More research and data is associating ME as an autoimmune disease and research meetings organised by Invest in ME Research (such as the Clinical Autoimmune Working Group and BRMEC3 meetings in London) are discussing this. The majority of the immune system can be found in the gut and it is therefore highly desirable to study the gut microbiota in ME patients. The gastrointestinal tract contains a microbiota consisting of a vast number of bacteria and viruses. The microbiota are the normal resident bacteria in the gut. There is an increase from top to bottom of the gut, with most being in the lower bowel. There are 10 times as many bacteria than cells in our bodies and bacterial genes are 100-fold.

The microbiota can influence intestinal barrier function and host defence against microbial challenge. Changes in the microbiota can cause local and systemic chronic inflammation.Genomics provides more accurate identification of bacteria, sequence information transmits to the function of the bacteria, and diet shapes the gut communities. Autoimmune reactions lead to inflammation, increased permeability of blood vessels and migration of lymphocytes to sites of injury.

Microglia within the brain can be primed during chronic inflammatory diseases, but can then induce inflammation in the brain when they are triggered by a second inflammatory challenge such as a systemic microbial infection. This raises the possibility that the damaging neuro-inflammation seen during ME may be triggered by systemic infections.

This project will determine if alterations in intestinal barrier function and/or microbiota exist in ME patients, and whether microbe-driven inflammatory responses can provide an explanation for the pathophysiology of ME.

This project will be looking for all viruses and determining the relevance of those found. Furthermore, such a project being performed in the UK will help raise the profile of ME in the UK and Europe as a disease demanding biomedical research.

The projects are being based around the Norwich Research Park - at the Institute of Food Research and Unversity of East Anglia.

The studentships will be based in the Norwich Medical School and the Institute for Food Research at Norwich Research Park. The student will analyse serum samples from patients with ME for integrity of intestinal barrier function. Faecal samples from patients will be analysed by high throughput pyrosequencing and appropriate bioinformatics to profile the microbiota in terms of bacteria and virus populations. Parallel studies will assess microbiota metabolism by LC/MS/NMR analysis by the IFR Metabolomics Partnership.

Professor Tom Wileman is Director of the Biomedical Research Centre.
Professor Carding is a gut immunologist at the Institute of Food Research (IFR).
Both Professors Wileman and Carding have attended our Biomedical Research into ME Colloquiums/Conferences.
Professor Wileman chaired our first Colloquium "Corridor Conference" in 2011 in London and Professor Carding gave an excellent presentation about the gut in health and disease in 2011 at the IIMEC6 2011 conference - available on our 2011 conference DVD.
Both are involved in the European ME Research Group (EMERG).

UEA and IFR are world-renowned organisations with some of the best researchers and facilities in Europe.
The institutions and researchers have expertise in this area and are well placed to perform this research.

Yes, it is and it is using advanced techniques. Invest in ME Research originally proposed this in April 2010.
It took two years for our supporters - patients and carers and friends - to raise the required funds to begin this project.
Since 2013, this area has been very topical regarding the study of ME as we move into looking at ME as an autoimmune disease and other establishments are thinking of performing similar work.

Yes, it can and it will.

The foundation project began in October 2013. This was a three year studentship project.
The charity is, however, funding continuing research at UEA/IFR, and elsewhere, to build a Centre of Excelence for ME.

There are standard clinical tests that have been used for decades to determine the permeability of the gut wall. It involves the patient drinking a sugar-based solution and then producing a urine sample at a later time point to determine whether or not the consumed sugar has crossed the gut wall and is present systemically and in the urine: a positive finding would be indicative of a leaky gut wall and would warrant further corroborative investigation. A leaky gut would no longer be an effective barrier to intestinal microbes or the factors and antigens they produce which could then gain access to the bloodstream and other parts of the body to trigger inflammation and if uncontrolled, tissue injury.

From a therapeutic standpoint and needing to know more about disease causality there is limited value in looking at or screening samples for the presence of inflammatory mediators or markers in isolation if the possible causes and origins are not known or investigated. Our project will be testing the hypothesis that the originating source of inflammation in ME is the gut and the leakage of microbial products from the gut lumen across and through a compromised gut barrier, which then initiate and perpetuate inflammatory reactions throughout the body. If a "leaky gut" can be established in these patients and we can demonstrate that their immune system and blood lymphocytes have reacted to the presence of microbial products normally found in the gut, then this provides a means of formally identifying over-stimulated immune cells and lymphocytes as a cause of disease and the source of inflammatory mediators, and what their identity and mechanism of action is. This information is of great value in designing more targeted and specific interventional therapies for ME.

There are standard clinical tests that have been used for decades to determine the permeability of the gut wall. It involves the patient drinking a sugar-based solution and then producing a urine sample at a later time point to determine whether or not the consumed sugar has crossed the gut wall and is present systemically and in the urine: a positive finding would be indicative of a leaky gut wall and would warrant further corroborative investigation. A leaky gut would no longer be an effective barrier to intestinal microbes or the factors and antigens they produce which could then gain access to the bloodstream and other parts of the body to trigger inflammation and if uncontrolled, tissue injury.

The study is focused on the cause and consequences of altered populations of gut microbes in ME patients.
More details at this link - http://www.investinme.org/ce-research.shtml

The student will analyse serum samples from patients with ME for integrity of intestinal barrier function. Faecal samples from patients will be analysed by high throughput pyrosequencing and appropriate bioinformatics to profile the microbiota in terms of bacteria and virus populations. Parallel studies will assess microbiota metabolism by LC/MS/NMR analysis by the IFR Metabolomics Partnership.

For the foundation project patients will be selected from Dr Bansal's patient cohort. This will use standard NHS guidelines and procedures for patient participation.
We hope further patient cohorts will be established from within the NHS.

The charity is funding the initial foundation project in full - thanks to our supporters. Depending on the study results this is an option which will be considered by the the charity and advisors as the project continues.

The UEA team are collaborating with Dr Amolak Bansal, who is the consultant immunologist and founder of the CFS service at St Helier Hospital.
The team have also established links to Oxford University, Imperial College London and with UCL regarding the rituximab trial.
Further international links have been made with other European institutes and with Cornell University in USA.
Dr Ian Gibson has also been the charity's advisor throughout the proposal for an examination and research facility in Norwich Research Park.

Invest in ME Research have run an international biomedical research conference on ME every year since 2006, now attended by representatives from most of the worldís main biomedical ME research teams. We have also initiated, with the Alison Hunter Memorial Foundation of Australia, a biomedical research collaborative meeting to foster collaboration among researchers, including a 2012 meeting on autoimmunity. Autoimmunity is, of course, an important aspect of the possible mechanism of rituximab in ME.

The funds for this project have been raised by supporters of Invest in MEResearch. Via determination and effort and the positivity of the Let's Do It For ME campaign we have been able to raise this funding when nobody else was considering this line of research. As part of a proposal for an examination and research facility which would lead to a Centre of Excellence for ME this foundation project proves what determination can achieve.

Other projects being funded include the UK rituximab clinical trial for ME and B-cell related studies - with IiMER working with University College London.

Invest in ME Research are working with researchers, as part of the Centre of Excellence development and to support the rituximab trial, on a more comprehensive and detailed analysis of antibodies.

We will also be funding a medical student to perform a Masters degree within the ME gut microbiota project and other medical students will be funded to participate in the research.

More details via this link.

We welcome support from other organisations, companies, groups and individuals for our research and we continue to raise funds for other biomedical research projects for ME via our Biomedical Research Fund which will be solely used for high-quality biomedical research and development.

We welcome your support in the form of donating, fundraising, spreading word of the project and other research being proposed and initiated by IiMER, or simply letting us know that you are behind us in this effort. Invest in ME Research is run entirely by volunteers.
There are no salaries paid at Invest in ME Research and no funds will be used for administration costs. All funds raised will be used in full for financing the biomedical research projects which are initiated. We need to raise awareness and interest from as many sources as possible.

Letís Do It for ME is our fundraising and awareness campaign for biomedical research into ME, led by our supporters. It has its own website, Facebook page and blog and is playing a major part in raising funds for Invest in ME Research's biomedical research projects. Use these links to learn more -

LDIFME website
LDIFME facebook
LDIFME blog

We will update this page and other pages on the web site with information about the project at regular intervals but if you have something you want to know but don't find it here then please contact us via this link

None of it. Invest in ME Research is run entirely by volunteers. There are no salaries and no funds will be used for administration costs. All funds raised will be used in full for financing the UK rituximab project and associated research. The funds are stored in a separate, ring-fenced bank account specifically used for the UK rituximab Trial.

Letís Do It for ME is our fundraising and awareness campaign for biomedical research into ME, led by our supporters. It has its own website, Facebook page and blog and is playing a major part in raising funds for the rituximab trial. website facebook blog