From Norway to Norwich – IiMER Rituximab Trial Update

Haukeland Team to Visit UK for Rituximab Trial Planning and Public Talks

Dr. Øystein Fluge and Dr. Ingrid Rekeland from Department of Oncology and Medical Physics Haukeland University Hospital, Bergen, Norway, will be joining Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia, for an event being held at The Assembly House in Norwich on 26th January, from 6.30pm to 9pm.

The meeting is open to the public and and the talks will be CPD-accredited.

Admission is free and places may be reserved by contacting Invest in ME Research by using the contact form on their website, or by emailing the charity at info@investinme.org with subject title Dr Øystein Fluge Public Talk.

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The public meeting will be a great opportunity for awareness of ground-breaking biomedical research into ME (Myalgic Encephalomyelitis) of the highest quality.

However, the main purpose of the visit by Dr. Fluge and his team is to discuss the UK clinical trial of rituximab as a treatment for ME, planned to be conducted in Norwich, the hub of the Invest in ME Research Centre of Excellence for ME. From an article on IFR News and Events –

Dr Øystein Fluge, a senior consultant and oncologist at Haukeland University Hospital in Norway will be talking about ground-breaking research he is leading on Rituximab. This drug has been used to treat leukaemia and lymphoma, as it targets B-cells, a type of blood cell. In 2004, Dr Fluge noticed that ME patients being treated for lymphoma with Rituximab also saw substantial improvements in their ME symptoms. Subsequently pilot studies and a randomised, blinded, placebo controlled study also showed positive results, with a large, multi-site Phase III clinical study now running.

Dr Fluge is visiting Norwich to collaborate over another Rituximab trial being carried out on the Norwich Research Park. Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia will also be talking about at the event about this, as well as research in his own group, who are looking for causes and treatments for ME in the gut and its microbial communities. The Norwich Research Park is establishing itself as a hub for biomedical research into ME, in the UK and Europe and through international collaborations.

Read in full at http://www.ifr.ac.uk/news/events/2017/01/mecfs-biomedical-research/

Solving Complex Disease With High-Quality Biomedical Research and International Collaboration – Invest in ME Research (IiMER) wrote –

We are pleased to announce that Dr Øystein Fluge and his team from Haukeland University Hospital in Bergen, Norway, will be visiting the Norwich Centre to continue and extend the collaboration between IiMER-funded researchers as the plans for the UK rituximab trial develop.

Already the IiMER funded researchers have been collaborating with Dr Fluge and Professor Mella and the team in Bergen – with Dr Jo Cambridge and Fane Mensah both having visited Norway as part of their continued collaboration to study the potential role of B cells in ME and they continue this collaboration.

IiMER also funded our advisor, Professor Jo Edwards as the first to visit Bergen back in the autumn of 2013.

This close collaboration benefits all researchers involved and is greatly appreciated.

Establishing biomedical research into ME and arranging clinical trials is not, and has not been easy. Invest in ME Research have been working tirelessly for many years attempting to foster, encourage, find, facilitate and eventually fund high-quality biomedical research which is built on a strategy which will lead to an understanding of the aetiology of this disease and the development of treatments.

Our strategy is also founded on international collaboration – of the right stuff.

This development is a further example of that strategy taking effect.

Read in full at http://www.investinme.org/ce-news-1611-02.shtml

The international collaboration fostered by Invest in ME Research extends beyond Europe. The charity’s 2016 international conference events enabled UCL B-cell/rituximab researchers Jo Cambridge and Fane Mensah to meet Chris Armstrong from Australia and Zaher Nahle, Vice President for Research and Scientific Programs at Solve ME/CFS Initiative. The USA organisation selected the three UK and Australian researchers as Team Two to benefit from their inaugural Ramsay Award Program, for a study of B-Cell Function, Maturation, and Biochemical Alteration with Rituximab-Based Therapy, a welcome addition to the IiMER funding of this aspect of their UK Centre of Excellence translational biomedical research strategy. Details here – http://solvecfs.org/ramsay-research-team-2-studying-b-cell-function-maturation-and-biochemical-alteration-with-rituximab-based-therapy/

Fane Mensah also gave a poster presentation at the IACFS conference at Fort Lauderdale in Florida, thanks to a travel grant awarded by Solve ME/CFS Inititaive, meeting up again with Team Haukeland, pictured below showing support for the Invest in ME Research Centre of Excellence for ME. More here – http://www.investinme.org/ce-news-1610-03.shtml

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£1/2 million Raised/Pledged for B-cell Research/Rituximab Trial – on the subject of funding and support for the IiMER UK Rituximab Research, the charity wrote

In 2013, following the BRMEC3 Colloquium, Invest in ME and its supporters honoured the commitment made by the charity a year earlier, at the IIME7 conference in 2012, to initiate a UK rituximab trial project.

Thanks to a wonderful group of supporters and support which came from around the world and the generous donations from people who want to see progress in the treatment of ME, this campaign was started and soon it was on its way to initiate research which had the opportunity of overturning the way things had been done, or not been done before.

An attitude of CAN DO instead of can’t do is the ethos of IiMER and this is supported by the WILL DO attitude of the Let’s Do It For ME campaign.

Then one event of enormous significance occurred with a magnificent gesture from the Hendrie Foundation to support the charity’s rituximab project and its strategy of international collaboration with a pledge eventually totalling £275,000, together with an initial donation of £25,000, which allowed this research to become reality and to move things on more quickly.

The work progressed with the team at UCL where it was decided early on that a preliminary B-cell study ought to be performed in order to try to replicate the B cell findings of Bansal et al. and to determine likely responders to the drug. This was something that our advisor and the UCL department thought was necessary.

This was initiated in 2014.

PhD student Fane Mensah is now continuing this B-cell research with Dr Jo Cambridge – again funded by IiMER.

This is important work and it is being enhanced by the international collaboration which we have encouraged and facilitated.

During this time the research team has collaborated with the researchers at Haukeland University hospital in Bergen, Norway – where work on a series of rituximab trials began to take shape as early as in 2004 – facilitated by IiMER’s Colloqiums, conferences, EMERG meetings, our strategy for international collaboration and our supporters.

After preliminary B-cell study was underway there was an internal reorganisation in the clinical trials unit (CTU) at UCL which resulted in the principal investigator being moved away from the project and the CTU being downsized. When this was communicated to the charity then we began to look for alternative solutions.

The trial was advertised on our web site in order for interested parties to apply to the charity and at the same time the charity actively continued to look for a place for the trial as the B-cell research continued.

The preliminary B-cell research paper was published in 2016.

After an expression of interest from UEA/IFR it was agreed to relocate the rituximab trial to Norwich Research Park, home for the UK Centre of Excellence for ME.

In January Dr Oystein Fluge and his team will visit Norwich to work with the UK researchers in planning the trial.

The original target for the rituximab trial was set by our advisor back in 2013. Having shown great vision and determination in looking at other areas of research linked to their phase III trial experiences and developing an incremental, evolutionary method of research then we feel the Norwegian Haukeland researchers have exactly the model of how good research should proceed. With the progress made by the Norwegian researchers and the increased knowledge now gained by them it will be interesting to see how the UK trial planning will progress with this new collaboration.

The objectives of the charity have been international collaboration and we are very pleased that a great deal of European collaboration in research into ME has already been occurring and continues.

To initiate the B-cell research and the UK rituximab trial has been a major effort and we owe so much to dedicated supporters from around the world. The charity has had donations and pledges from many organisations and individuals around the world.

They have believed in the charity and the research.

We welcome support still for this research. Donations or pledges can still be made in support of the Invest in ME Research-led project.

Read in full at http://www.investinme.org/ce-news-1611-03.shtml

UPDATES

The video clip below of the Haukeland ME team on Norwegian TV news talking about their latest study now has English subtitles added. They say once again very clearly that ME is a physical disease and it can be treated. Good to hear these objective and careful researchers sounding so positive.

Another excellent news clip featuring an interview with Dr. Fluge on his team’s latest findings and their rituximab trial now also with English subtitles. The clip also features Norwegian advocate and mother of three children with ME, Kjersti Krisner, who gave the pre-conference dinner presentation at the Invest in MR Conference events in London in 2016, inlcuded on the IIMEC11 DVD. Read about it here – http://www.investinme.eu/IIMEC11-news%20Pre-Conf-Postscript.shtml


NEW YEAR DONATIONS UPDATE for B-CELL/RITUXIMAB RESEARCH

Links –

IFR News and Events- Public Lecture in Norwich on ME/CFS biomedical research

IiMER- Solving Complex Disease With High-Quality Biomedical Research and International Collaboration

IiMER Rituximab Trial Update- £1/2 million Raised/Pledged for B-cell Research/Rituximab Trial

Ways to Donate

Funders and Supporters of the IiMER UK B-cell/Rituximab Research

IiMER is an independent charity run entirely by volunteers. They have no paid staff, no income from government funds or membership fees.Thanks everyone supporting Invest in ME Research
and their Centre of Excellence for ME

New Year Update on IiMER Gut Microbiota Research

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Good news to start the year, Invest in ME Research (IiMER) posted an update to their gut microbiota and related projects being performed at the UK Centre of Excellence for ME in Norwich Research Park due to some very kind donations to their research being carried out in Norwich Research Park at the Instiute of Food Research (IFR) and University of East Anglia (UEA). They wrote –

We have recently received a wonderful donation from the Freemasons in Norwich and from a Ladies Sunday Lunch raffle in Norwich.

IiMER have decided to supplement this with funds from our biomedical research funds in order to make the total up to £2000.

This means that the total we have now raised for past, current and planned projects at UEA/IFR Centre of Excellence for ME is £181,000.

The cheques were presented at a dinner just before Christmas in Norwich.

Collecting the donations on behalf of Invest in ME Research were Dr Ian Gibson, Professor Simon Carding and Professor Tom Wileman, from IFR/UEA.

At the dinner Dr Gibson and Professors Carding and Wileman spoke of the charity and the research into ME being undertaken at UEA and IFR.

More details of this wil be availble from the Institute of Food Research (IFR) site soon.

We are indebted to the Masons and the Ladies for this wonderful gesture.

(Read post in full here – http://future.cofeforme.eu/ce-news-1701-01.shtml)

Our page about the IiMER Gut Microbiota Research Project

Thanks everyone supporting Invest in ME Research
and their Centre of Excellence for ME

August Updates

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Phew! Another sizzling summer month on the international scene for supporters and colleagues of Invest in ME Research. As the charity quoted for Stacy Hart’s 4th August blog at Runnin On Empty…

“It is summer and it means holidays for most – but not for Invest in ME volunteers. Fundraising for our strategy of biomedical research projects continues with numerous schemes being set up to raise awareness and funds by a great team of supporters.

Since the June conference in London the charity has been busy getting the DVD of the event ready for delivery. The many hours of film footage need to be edited to a format that contains information in an accessible form, avoids unnecessary gaps, unplanned noises, comments or delays.

As ME is such an underfunded and under researched condition it is supporters of our charity that enable us to provide the latest education on research into ME – and build a strategy based on international collaboration in translational biomedical research – which looks for causes rather than simplistic psychological remedies that waste time and money – and lives.

Unfortunately, the NHS provides very little for ME patients and the services do not match the demand. Patients and carers rely on the internet and charities like ours to provide the information. Kjersti Krisner from Norway spoke at the pre- conference dinner about very severely ill ME patients and she said they are so grateful when someone cares about them. They live in hope and are so happy if they improve a little. Kjersti’s wonderful, positive pre-conference presentation is a must-see – and will open our IIMEC11 conference DVD.”

The IIMEC11 DVD containing the full presentations by leading biomedical researchers into this disease from around the world at the CPD-accredited 11th Invest in ME Conference held in London in June is available now and has already been distributed to 15 countries.

The conference followed the 2-day Invest in ME Biomedical Research Colloquium which brought researchers together from 13 countries to foster international collaboration in biomedical research into this disease. The conference report is available here. The keynote speech was given by Dr Vicky Whittemore of the NIH. The last research presentation of the day was given by Director of the Stanford Genome Technology Center at Stanford University, Ron Davis, whose son Whitney Dafoe has very severe ME/CFS. As promised, the IIMEC11 DVD also includes the very moving and thought-provoking presentation ‘Voice for the Voiceless’ by Kjersti Krisner, Norwegian advocate and mother of three children with severe ME. Order it here http://www.investinme.eu/IIMEC11.shtml#dvd

Severe ME Day
Severe ME Day is held on 8th August in honour of the birthday of the late Sophie Mirza, launched by The 25% M.E. Group in 2013 as a day to bring public awareness to those suffering from Severe and Very Severe Myalgic Encephalomyelitis and to remember all those no longer with us. The idea for this special day of understanding and remembrance was conceived by Diane, whose daughter Lili sadly died last year. Diane’s Story – Lili was published by Invest in ME in February 2013.

The Let’s Do It for ME campaign was launched by people with severe ME, inspired by an article in the Eastern Daily Press in April 2011 on the progress of the proposal by Invest in ME to establish a Centre of Excellence for ME, featuring Kerry Newnham. Kerry has severe ME and was a text pal of Lynn Gilderdale, pictured at the top of our memorial poster created by Caged Bird with kind permission of Lynn’s mother, Kay Gilderdale. The names in the background of the poster are from the National CFIDS Foundation Memorial List.

Fundraising Updates
Jane Hurst raises funds for The 25% M.E. Group and Invest in ME Research through sales of the greetings cards she creates at home as a long term sufferer of severe ME. Jane’s Nature Photocards are available to buy online and her family also hold sales at local venues throughout the year. After a sale at O’Flynn’s Budgen’s Poringland store on 13th August, Christine Hurst (Jane’s mum) wrote, “We did really well and just about sold out. Everyone was full of praise for Jane’s lovely cards and we raised £186.20. Thank you O’Flynns Budgens for letting us sell the cards and their very generous customers.” O’Flynn’s Budgens tweeted, “Well done and thank you to all. We hope Christine will be in store again soon”. Our thanks and congratulations to the store on their 10th Anniversary this year!
Bill Clayton of The York ME Community set up a JustGiving page for Invest in ME in August. “Although I’m no longer able to work, I have short periods where I can concentrate on projects such as fund raising for Invest in ME who are doing such great work. The current project is with the aim of gaining more foot soldiers in the York area by bringing businesses on board by offering to advise their HR Teams about ME and through our inaugural Inter Company Fantasy Football League. Every penny of the funds raised from their registration fees will go to Invest in ME, and the hope is to to continue to raise funds in other ways too. Thanks to the York businesses who have supported us in supporting Invest in ME Research.”
Congratulations to Maria Houlihan on winning Lucy Macdonald’s Forgetmenot Quilt raffle drawn on 11th August. Lucy added, “Commiserations to those of you who didn’t win but may you have peace in the knowledge that the funds raised will be for the winning of a cure of this chronic dis-ease. Thanks again to all of you who took part.”
High five to Chris Turner for doing a skydive on 14th August, and thanks to his supporters raising £405 + £92.50 for Invest in ME!
On 15th August, Mike Harley was in Poland to run the 7th of his 28 EU Marathons. He wrote, “The finish was superb, amongst the best I’ve experienced, I ran over the line with my Invest In ME flag and got snapped a lot”.
Winner and runner up of Paul Kayes’ Rio Sweepstake generously donated their prize money to Mike’s JustGiving page. Thanks eveyone supporting Mike’s mega marathon challenge for Invest in ME.
Emily Norton correctly guessed the exact number of medals in Sophie Tennent’s Rio 16 Charity Sweepstake, which added at least an extra £50+ into Sophie’s JustGiving page in memory of those who have passed away from ME. She wrote, “It all adds up and I am entirely grateful for your support”.
Thanks everyone who organised and took part in the Charity Sweepstakes.
Big thanks to tenacious Team Rainbow Rabbits for doing The Colour Run Birmingham on 20th August for Invest in ME! Becky Hithersay wrote, “We did it!  Big huge thank you to all who sponsored us, you raised £257 (plus an extra £46.75 Gift Aid) for IiME (Invest in M.E). This is a fantastic amount and we’re really grateful to every one of you. Hopefully this also will reach those who didn’t leave names. Goodness me, I’m overwhelmed! Here’s a few pics, what a great day we all had, and the kids did a fantastic job”.
Inspired by a friend with ME “opening her eyes to this illness”, Penny Hooper announced her plans to raise awareness and funds for Invest in ME while going Round the World for ME and also nominating friends for a colourful challenge! You can find Penny’s page on Facebook, follow her on Twitter and read her story on JustGiving. Big thanks to Penny and everyone supporting her.
Stu Nimmo geared up for his runs for Invest in ME Research with specially designed T-shirts. He is doing this to support Karen Morris and donations go to her page on JustGiving. You can find Stu Nimmo runs for Invest in ME Research on Facebook, follow Karen Morris on Twitter, and support their fundraising efforts at Karen’s page on JustGiving.
Chloe Riches posted on 16th August, “I’ve gone blue! Now just waiting for 6th September before it all comes off 🙂 please share/donate to help this great cause 🙂 thankyou xxx”
Paul Kayes wrote that, so far he has earned £361.52 using TopCashBack all of which has been donated to Invest in ME Research and gift aid added so £450 in total. Would you be willing to sign up using our referral link? http://www.topcashback.co.uk/ref/paulk22
Lynne Allan continued to sell her delightful hand-crafted jewellery available on Etsy at ME2UDezignz with proceeds kindly donated to Invest in ME Research. You can find ME2UDezignz on Facebook, follow on Twitter, and keep an eye out for her Fiver Friday offers.
Thanks to Alison Orr, Invest in ME is one of 204 charities nominated by Phoenix traders which will receive a donation from The Phoenix International Charity ranging from £50 to £1,000, based on 70% of the funds raised through Christmas card sales in 2016. Alison added, “At least 20% of all sales through www.cards4investinme.co.uk goes to Invest in ME, so buy your Christmas cards from me and even more will be donated to Invest in ME! The Christmas brochure is online now. Have a look at the online flipbook version at the link. Delivery only £4. All profit to Invest in ME.” You can find Cards 4 Invest in ME on Facebook and follow on Twitter.
Research Updates
August Update on Invest in ME B-cell/Rituximab Research

Invest in ME announced that they have agreed to fund an additional student at UCL to assist with the project “B cell function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Investigations of metabolic function during B cell maturation and differentiation”. The aim is to investigate potential differences in B cell maturation, differentiation and metabolism between patients with ME/CFS and healthy controls.  The charity will underpin the extra work with a grant of £9000 to cover the student who will work until early 2017 assisting existing PhD student Fane Mensah and Dr Jo Cambridge. The team hope to identify whether potential differences are due to alterations in signalling or metabolism in B cells from ME/CFS patients and the additional student resource will hopefully accelerate Fane’s project.

Thanks to mulitiple generous acts from individuals and organisations (click here) and the amazing generosity from the Hendrie Foundation who have pledged a huge sum toward the rituximab trial and B-cell research, Invest in ME has managed at the time of this article, to raise £495,000 for the total research either performed, underway or coming to be performed. (click here to donate).

August Update on Invest in ME Gut Microbiome Research

The total raised reached £175k of the £200k target and the charity posted –

Invest in ME continue to build their foundation of biomedical research at Norwich Research Park by maintaining their medical student sponsorship grant strategy for the third year running. The medical students they sponsor take part in the biomedical research projects the charity is funding which gives experience but also raises awareness amongst other medical students about myalgic encephalomyelitis. Their grants are for £5000 minimum.
They plan on continuing to maintain this key part of their research strategy. (click here to donate).

Upcoming in September

1st September: 1st of the month – the day to donate £1 to Invest in ME Research

4th September: Stu Nimmo runs Salford Quays 10k – www.justgiving.com/fundraising/isupportmeresearch

6th September: Chloe’s Head Shave for Invest in ME – www.justgiving.com/fundraising/Chloe-Riches1

12th September: Makayla Nunn will be 13 years old. She wrote,
“it will be 5 yrs in October that I have been ill, but this summer the hospital have said if I can manage and pace myself I can spend extra time with my horse Tommy. So because of this I want to challenge myself and Tommy to jump a 4ft jump… this will be a challenge as I’ve not been jumping for that long and Tommy has had a bit of a rest from jumping but I know we can do it and no better way to challenge myself than raise money for Invest in M.E at the same time. Please help me to help Invest in M.E because this illness can affect anyone at anytime and at any age no matter how fit or active they are M.E doesn’t care but I do I want answers. Thanks for taking the time to visit my JustGiving page.” www.justgiving.com/fundraising/Makayla-Nunn2

28th September: Deadline for voting for the JustGiving Charity of the Year award. You can vote once for any JustGiving charity, up until Wednesday 28th September 2016. Click here and type in IiME then click on their logo to complete the online voting form.

Wishing you all a super September – thanks so much for your support!

Review of Invest in ME Gut Research – what next?

It’s been all go since our last update on the Invest in ME Research studies of the Gut Microbiome in Myalgic Encephalomyelitis (ME/CFS for research purposes) in April. Firstly, thanks to all the patients and carers responding to the call to provide samples for the latest phase of this research. The patients taking part are under the care of Consultant Immunologist, Dr Amolak Bansal. The lab work is done at world-renowned Norwich Research Park, the base for the Invest in ME Research Centre of Excellence for ME. PhD student Daniel Vipond and Dr Navena Navaneetharaja have been busy (and getting up at 2am to set out on their journeys on some days) collecting samples from several severely ill house bound patients – an admirable result as patients with severe ME are not easy to access and they have only been collecting these samples for a relatively short time.

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It’s wonderful that Dr Navena Navaneetharaja is still actively involved in this research now that she is a qualified medical doctor. As a medical student working on the Invest in ME Research on the gut microbiome, she spent three months in USA working with Professor Maureen Hanson in her lab at Cornell University.

Professor Maureen Hanson gave a presentation at the Invest in ME Conference in London on 3rd June, prior to publication of a paper on 23rd June,
‘Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome’, which has received widespread attention in mainstream and international media.

The Cornell researchers found a lower diversity of bacterial species present in the gut of ME/CFS patients compared to controls. This lower diversity of gut bacteria is also found in Crohn’s disease and ulcerative colitis, both of which are caused by a malfunctioning immune system.

They were also able to identify patients with ME/CFS and healthy controls with 83% accuracy by analysing bacterial DNA from the gut microbiome.

Science writer Conrad Bower reported in The Canary that Professor Hanson,
“tantalised the conference with news of an as yet unpublished study, using microbiome metabolites as biomarkers, that has achieved 100% accuracy in diagnosing ME/CFS.”

Maureen Hanson

Maureen Hanson

At the conference, Professor Tom Wileman talked about viruses in the gut – the gut virome. The gut contains billions of bacteria, and has its own immune system, which ignores our own bacteria and attacks ‘bad bacteria’.

Some viruses live in or on the gut bacteria. These viruses are called bacteriophages (or phages for short). A number of small and large viruses are involved. They may kill the good as well as bad bacteria.

The greater the diversity of viruses, the less the diversity of bacteria.

Professor Wileman described the technique they used to find viruses in the gut. 100mg of faeces was placed in water, centrifuged and strained to obtain just the viruses. 16 samples of those with moderate ME/CFS have been studied. Each sample gives 2 million readouts. Software then sequences the viruses. 23 different families of bacteria were found, each with different phages. The imbalance of phage population may correlate with disease. This has been shown in inflammatory bowel disease.

Tom WilemanTom Wileman

Another familiar face at the Invest in ME Conference Events, Professor Mady Hornig, discussed the programme at Columbia University, USA. Microbiota are complex and involve the whole body. Many factors can cause disruption across the lifespan, from pregnancy to birth and infancy. Then follows environmental effects, genetic development and issues such as antibiotics. Professor Mady Hornig led a public meeting at Norwich Research Park last October with PhD student working on the Invest in ME Research on B-cells, Fane Mensah.

Fane Mensah  & Mady Hornig

Fane Mensah & Mady Hornig

Professor Simon Carding’s conference presentation on the recently formed European ME Research Group included reference to their plans to build on current activity and feasibility, such as: 1) Infectious origin a) environment b) microbiome alterations 2) Clinical trials a) Rituximab b) Bacteria based therapy.

This all underlines the Invest in ME Research strategy of facilitating international collaboration in their development of a UK/European Centre of Excellence for ME, as well as world-class professional support for the next generation of medical doctors and scientists. The charity commented that the continuing work and atmosphere at Norwich Research Park is very encouraging.

Simon Carding

Simon Carding

The full presentations at the 11th Invest in ME Conference in June are on the IIMEC11 DVD. Written summaries are in the official Conference Report prepared by Dr. Rosamund Vallings. You can find it on the Invest in ME Conference & Colloquium website here and in pdf here.

The second paper from the Invest in ME Research strategy was published on 6th June in the Journal of Clinical Medicine. Dr Navena Navaneetharaja is lead author of this detailed review, which examines mounting evidence pointing towards an infectious and autoimmune basis for ME/CFS, with emphasis placed on the impact of the intestinal microbiota and virome – the bacterial and viral communities resident within our gut.  The paper is co-authored with medical student Verity Griffiths, Professor Simon Carding and Professor Tom Wileman from the University of East Anglia Norwich Medical School and Institute of Food Research, all based at Norwich Research Park. It is titled, ‘A Role for the Intestinal Microbiota and Virome in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?

JCM

So what’s next?

From a summary ‘ME/CFS – New review advocates a spotlight on both bacteria and viruses within the gut‘ on the Gut Health and Food Safety Programme blog, by Dr Navena Navaneetharaja,

“Our recent review highlights current understanding of the role of infection in triggering myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We focus on the origin of persistent immune-related symptoms in the condition and describe mechanisms that may explain underlying immune impairment and potential autoimmune processes in ME/CFS, where B cell depletion therapy is of significant therapeutic benefit. We also provide focus for further research by exploring the potential impact of the intestinal microbiome and virome using sensitive study designs.”

She concluded,

“The next steps in the Carding lab are to correlate phage populations in patients with severe disease compared to house-matched controls. This work has the potential to elucidate more distinct subpopulations within current ME/CFS classifications and of upmost importance, has the potential to influence therapeutics, providing much-needed approaches in preventing and managing a disease in need of confronting.”

bacteriophages in ME patient sample
Bacteriophages in ME patient sample

In an article on the review for the Institute of Food Research, ‘Do the Answers to ME/CFS lie within our Gut? Ben Halford wrote,

“Whilst virus detection and identification is currently difficult, the virome is considered more stable and personal than our resident bacterial communities potentially pointing towards a specific virome profile for ME/CFS patients.

If the detailed research efforts can be accelerated and conducted in a co-ordinated fashion, it will support the development of therapeutics to address and alleviate the diverse range of incapacitating symptoms of ME/CFS, and will then ultimately provide much hope in moving towards prevention of a disease ignored for too long.”

Journal of  Clinical Medicine  June 2016
Journal of Clinical Medicine June 2016

Two new PhD students will start in September/October in Norwich Research Park. One is funded by Invest in ME. The other is a self-funding student who is experienced in laboratory work and was specifically interested in participating in the ME research which has been started at UEA/IFR.

A third student position funded by Invest in ME is being advertised later in the summer.  With Daniel Vipond, this makes four PhD positions current or planned involved with the research into ME at Norwich Research Park.

The charity is 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!

UEA/IFR & UCL medical students at IIMEC10
UEA/IFR & UCL students at IIMEC10

The excellent work and progress described above in the careful and coordinated search for biological markers and medical treatment options for this disease is enabled by innovative and generous supporters raising funds in a number of ways, such as doing charity collections for Invest in ME, sponsored challenges (including the IFR Chilli M.E. Challenge!), fundraising events, selling handmade crafts or other items, taking part in various ways to raise funds for free, offering matched funding, or simply donating to the charity.

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The dedicated fundraising page for the Invest in ME Gut Research on JustGiving received a welcome boost of €3115 in May, thanks to Noreen and Anthony Murphy and their friends and family Walk for M.E. at the beautiful Belvedere House and Gardens at Mullingar in Ireland for ME Awareness Month.

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Thank you everyone supporting this vital research.

Ways to donate to the Invest in ME Gut Research

JustGivingjustgiving.com/fundraising/gutmicrobiome

Text MEGR66 (£1-£5 or £10) to 70070 (UK only).

Bank Transfer:

Please specify code BRF04MICROBIOME to donate to the Invest in ME Gut Research Fund.

Bank: Lloyds TSB Eastleigh
Sorting code: 30-92-94
Account number: 02252685

Bank Transfer from outside the UK:

IBAN: GB63 Loyd 3092 9402 2526 85
BIC/SWIFT: LOYDGB21209

Cheque:

Write Gut Projects Fund on the back to specify this fund.

Send cheques payable to Invest in ME to:

Invest in ME
PO Box 561
Eastleigh
Hampshire
SO50 0GQ

Paypal:

Click here – http://bit.ly/29yC8gz

Download a Gift Aid form (UK tax-payers).

Full info, FAQs, News, Donate – on Invest in ME website.

Thank you for your support!

£175k

(last updated August 2016)

Update on IiME Gut Microbiome Research

Professor Tom Wileman will be presenting preliminary results of the IiME research on the role of gut microbiota in Myalgic Encephalomyelitis (ME) in London in June at the 11th Invest in ME Conference and 6th Biomedical Researchers into ME Colloquium. News page here.

The current phase of this research is to collect blood and stool samples from severely ill patients by visiting some in their homes. The patients need to be current patients of Dr Amolak Bansal, as ethics rules demand that a named doctor is responsible for any patients taking part in research. Dr. Bansal leads the specialist clinic in Sutton, Surrey. Patients have been sampled all through the project once ethical approval had been obtained.

The PhD student working on this research, Daniel Vipond, is organising this latest sampling of patients in the most effective way possible. He will be travelling from the week of the 11th April to ME sufferers homes to collect blood and stool samples. Rachel Fulton posted in Invest in ME group on Facebook:

“It has taken years to get this project off the ground and a huge amount of fund raising. I would be so grateful if more people can take part in this study. We will ALL benefit from more bio-medical research doing into ME.”

If you are a patient of Dr. Amolak Bansal with a firm diagnosis of ME, particularly if you are housebound or severely affected, and would like to take part, please get in touch with Daniel Vipond as soon as possible.

Email daniel.vipond@ifr.ac.uk or call 07943149314.

Contact details are on the participation posters published in April 2015.

The Let’s Do It for ME campaign was launched by patients with severe ME to help raise awareness and funds for this research, the foundation project of the IiME UK Centre of Excellence research strategy.

The Institute of Food Research and University of East Anglia issued press releases in March 2014 and Susie Fowler-Watt interviewed Professor Simon Carding for a May 2015 report by BBC Look East. Our thanks to everyone involved.

Read all about the IiME Gut Microbiota Research on our page here.

The current total raised for the IiME Gut Microbiota Research is £166k of £200k target. You can donate from any country on JustGiving
or text MEGR66 (£1-£5 or £10) to 70070 (UK only).

Or donate on Invest in ME website here.

Thank you for your support!

April 2016

Gut-Microbiota-166k
 
Participation Posters Published April 2015