Latest News
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August 2016 |
Invest in ME continue to build our foundation of biomedical research at Norwich Research Park by maintaining
our medical student sponsorship grant strategy for the third year running.
The medical students that we sponsor take part in the biomedical research projects that we are funding
which gives experience but also raises awareness amongst other medical students about
myalgic encephalomyelitis.
Our grants are for £5000 minimum.
We plan on continuing to maintain this key part of our research strategy.
See also story below.
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June 2016 |
New paper published by IiME-funded students at UEA/IFR.
A Role for the Intestinal Microbiota and Virome in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?
Click here
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May 2016 |
Ahead of our upcoming 11th International ME Conference we have a short update here about progress with
the project.
We recently met with IFR/UEA researchers to discuss progress of the gut microbiota project.
PhD student Daniel Vipond and Dr Navena Navaneetharaja have been busy collecting samples from severely ill
house bound patients - sometimes getting up at 2am! to set out on their journeys on some days.
They have sampled 11 severely ill patients so far which is an admirable result as these patients are not easy to access and they have only been collecting
these samples for a relatively short time.
Two new PhD students will start in September/October in Norwich Research Park.
One is funded by IiME and another one is a self-funding student who wishes to be part of the research and who is experienced in laboratory work.
This student was specifically interested in participating in the ME research which has been started
at UEA/IFR.
This underelines our strategy of creating the Centre of Excellence for ME.
A third student position funded by IiME is being advertised later in the summer.
Invest in ME are also aiming to keep the MedRes studentships going as these have turned out to be very successful in many ways.
These highly motivated medical students are not only very helpful for the research projects but they also become better ME educated doctors
as well as influencing their student peers.
Some even stay involved in ME research!
The continuing work and atmosphere at NRP is very encouraging.
Professor Tom Wileman will discuss the project at our forthcoming IIMEC11 International ME Conference on 3rd June in London.
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Nov 2015 |
IiME will have a microsite for the Gut Microbiota projects ready when our new web site is launched.
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Nov 2015 |
IiME Presented on Crowdfunding for Norwich Research Park at the IFR Social Media:
Social Media for Science - Successful crowd funding for the Norwich Research Park
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Nov 2015 |
New IiME funded research advertised:
Defining autoimmune aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
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May 2015 |
UEA Students/Researchers at IIMEC10 - International ME Conference 2015 London
The PhD and intercalating medical students involved in the IiME funded UK gut microbiota research participated in a panel session at the recent 10th International ME Conference in London on 29th May.
Bharat Harbham, Daniel Vipond and Navena Navaenanarathrama answered questions from the audience about their research and their impressions of ME.
Along with Fane Mensah, PhD student at the IiME funded B-cell/rituximab study at UCL, the students gave very mature and interesting responses
and provided a view of the next generation of researchers into ME.
More details of the conference are at http://www.investinme.org
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May 2015 |
BBC Interview with Professor Simon Carding
Prof. Simon Carding, Leader of the Gut Health and Food Safety Research Programme,
Institute of Food Research and Norwich Medical School at the University of East Anglia, was interviewed by BBC journalist Susie Fowler-Watt
and describes the project which Invest in ME is funding.
More details here.
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May 2015 |
Professor Simon Carding - Gut bacteria and mind control: to fix your brain, fix your gut!
Prof. Simon Carding, Leader of the Gut Health and Food Safety Research Programme,
Institute of Food Research and Norwich Medical School at the University of East Anglia, describes
our current understanding of the human gut and its relationship with its human host
More details here.
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April 2015 |
Participate in IiME funded biomedical research into ME
More details here.
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March 2015 |
The Irish ME Trust have contributed to the Invest in ME Biomedical Research Fund toward the
planned gut microbiota projects at UEA/IFR
More details here.
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February 2015 |
Invest in ME have committed to funding two more PhD studentships at UEA and IFR.
This brings the total to three. The charity continues to support medical students who are participating in the research studies.
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January 2015 |
New total for the UK Gut Microbiota follow-on research -
£130,000. Boldly going where no one has gone before for ME research. Target £200,000 |

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October 2014 |
New total for the UK Gut Microbiota follow-on research -
£115,000. Target £200,000 |

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September 2014 |
UK Gut Microbiota Project
Update
An update from the research team |

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September 2014 |
UK Gut Microbiota Phase II
Breaks £10000
Supporters have now raised £10000 toward the planned
phase II studies |

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August 2014 |
UK Gut Microbiota
Micro-site We will have a distinct
web site for the UK Gut Microbiota projects - coming
soon |

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August 2014
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Totals Update £5000 for our follow-on projects - Target
£100,000
As per our February 2014 invitation for
follow-on phases (see below) the UEA/IFR have expressed interest and we
hope to publish details in due course. |

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March 2014
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UEA and IFR
Press Releases IFR Press Release -
Click here
UEA Press Release -
Click Here
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February 2014
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We are now funding future phases of this
work to build a solid base of research into ME.
This is open to all academic institutions.
See the
Invest in ME Research Grants Policy - click
here
Please help us.
The new fundraising thermometer on the
right shows our progress in raising funds for the follow-on work.
There is a Donate button at the bottom of
this page to help us achieve the new target of £100,000. This will fund
a follow-on studentship which will complement the work already underway as we
broaden the scope of the study and establish the foundations for a
centre of excellence for ME. |
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May 2013
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Initial target reached
-
Click here |

Project Description
From 2007 the charity focused on a policy of campaigning for better
education and for high-quality biomedical research into ME.
Having had a generation of poor and under-funded research into ME, a
lack of treatments, lack of proper examinations, and a failing of
any change to occur or even be contemplated, it became clear that
we needed to break the mould. This led to our proposal for a
research and development facility which could lead to a UK Centre of
Excellence for ME [1].
As part of this Invest in ME representatives first met the then Dean of
Medicine at UEA, Professor Sam Leinster, in April 2010. This meeting was
made possible with the help of our advisor Dr Ian Gibson, former Dean of the
School of Biological Sciences at UEA.
Professor Leinster was willing to help us get started with research
into ME and introduced us to Professor Tom Wileman, Director of the
Biomedical Research Centre. Professor Wileman suggested developing unbiased
research using the genome sequencing facility at the Norwich
Research Park, TGAC, to look at all known and unknown viruses in
the faecal samples of ME patients. He introduced Professor Carding,
a gut immunologist at the Institute of Food Research (IFR), to the
project as the emerging science was increasingly showing that the
gut microbiota played a major role in many chronic diseases.
Invest in ME funded
Professor Wileman's attendance at the 2010 Australian symposium organised
by the Alison Hunter Memorial Foundation and the Bond University [2] to get a
feeling of the ME research landscape. He and Professor Carding have
since chaired, co-chaired/attended all of the research meetings
organised by Invest in ME [3].
Professor Carding gave an excellent presentation
about the gut in health and disease in 2011 at IIMEC6 [4] and outlined the Invest
in ME project to the attendees of the 2013 research meeting [5].
Meanwhile the charity's discussions with Norfolk Primary Care Trust (PCT) had
produced an agreement to fund a consultant
for the patient examinations. Unfortunately, since the NHS reforms and PCTs
having been disbanded our original plans needed to be modified. As there is no
consultant at the Norfolk ME/CFS service we asked Dr Bansal from
St Helier and Epsom Hospital Trust in Sutton to become involved in the
project to identify suitable patients from his patient database. Now
we had all the main people in place and set out a funding target of
£100 000 to be able to fund a PhD studentship.
Patient volunteers set up the Let’s do it for ME campaign [6] to help us
achieve this formidable target within the ME community. It took
two years to raise the necessary funds but finally in May 2013 at
IIMEC8 [7] we
were able to announce that the funds had been raised to begin the
PhD studentship at UEA/IFR. The PhD studentship began under the
guidance of Professors Carding and Wileman in October.
In addition to this we are pleased to announce that a medical
student has also been identified to intercalate and perform a Masters
degree within this project with the help of sponsorship from Invest
in ME. The charity’s aim is to be able to fund several of these
medical students to encourage them to intercalate in ME related post
graduate research and thereby improve the knowledge of ME within the
healthcare services and within the medical student environment.
Our
aim is to improve education, initiate high-quality biomedical
research into ME and raise awareness.
The foundation project is titled “A role for a leaky gut and the
intestinal microbiota in the pathophysiology of myalgic
encephalomyelitis” [8].
The links below open provide more information when
you click on them.
Why is this project important?
More research and data
is associating ME as an autoimmune disease and research meetings organised
by Invest in ME (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.
Where will the
project take place?
The
project is being performed at the Unversity of East Anglia, and in
conjunction with two other major organisations in the Norwich Research Park
- the Institute of Food Research and the TGAC.
The studentship 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 last two
Biomedical Research into ME Collaborative meetings. Professor Wileman chaired our
"Corridor Conference" round table discussion 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.
Why is UEA/IFR the best place to
perform the project?
UEA and IFR are world-renowned organisations with some of the best researchers and
facilities in the UK.
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 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. Now, in 2013, this area
is 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.
Can this study help move research forward?
Yes, it
can and it will.
“I think that this is extremely important because the microbiome in our intestinal tract has the potential to polarize and modulate immune responses. It is imperative, then, that we characterize those."
"That’s one more thing that I want to mention with respect to the microbiome. I think that the microbiome is going to be where the action is."
- Professor Ian Lipkin, John Snow Professor of Epidemiology
Director, Center for Infection and Immunity
Professor of Neurology and Pathology, Mailman School of Public Health and College of Physicians and Surgeons, Columbia University
How far ahead is the
project?
The project began in October 2013. This is a three year
studentship project.
When are the first results of this study likely to emerge?
This
will depend on how long it takes to recruit sufficient numbers of patients
and to fully optimise and validate the assays to be used on the patient
samples. The team would, however, expect to have some preliminary findings with 18
months of beginning to receive patients’ samples.
How would leaky gut be investigated as opposed to the microbiome/microbiota metabolism?
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.
Does the study involve looking at inflammatory markers?
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.
How would leaky gut be investigated as opposed to the microbiome/microbiota metabolism?
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.
What is the focus of this research?
The study is focused on the cause and
consequences of altered populations of gut microbes in ME patients.
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.
How can I take part in the project?
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.
Will the researchers ask for government funding?
The
charity is funding this study 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.
Who else is advising on the
project?
The UEA team are collaborating with Dr Amolak Bansal, who is the consultant immunologist and founder of the CFS service at St Helier
Hospital. Dr Ian Gibson has also been the charity's advisor throughout
the proposal for an examination and research facility in Norwich Research
Park.
What else is Invest in ME doing
regarding research?
Invest in ME have run an international biomedical research conference on ME every year since 2006, now attended by representatives from most of the world’s 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 ME. 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 IiME working with
University College London.
Invest in ME are working with researchers, as part of the examinations facility proposal and to support the rituximab trial, on a more comprehensive and detailed analysis of antibodies binding the hypothalamus.
We will also be
funding a medical student to perform a Masters degree within the ME gut
microbiota project.
More details
via this link.
We welcome support from other organisations, companies, groups and individuals for our proposal 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.
We welcome your support in the form of donating, fundraising, spreading word of the project and other research being proposed and initiated by IiME, or simply letting us know that you are behind us in this effort. Invest in ME 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 biomedical research projects which are initiated. We need to raise awareness and interest from as many sources as possible.
What is Let’s Do It for ME?
Let’s 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's biomedical research projects. Use these links to learn more -
LDIFME website
LDIFME facebook
LDIFME
blog
Can I ask questions about the project?
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 email us at info@investinme.org.
We will also accept questions using an interface on this site which will be developed -
info@investinme.org
References:
Further Reading