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.


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“tantalised the conference with news of an as yet unpublished study, using microbiome metabolites as biomarkers, that has achieved 100% accuracy in diagnosing ME/CFS.”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)?


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.


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.


Thank you everyone supporting this vital research.

Ways to donate to the Invest in ME Gut Research

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


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
SO50 0GQ


Click here –

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

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

Thank you for your support!


(last updated August 2016)

February Updates

feb updates
Short month – long list of great news!

The Quadram Institute is the name of the new centre for food and health research to be located at the heart of the Norwich Research Park, one of Europe’s largest single-site concentrations of research in food, health and environmental sciences. It is to be led by the current Director of the Institute of Food Research, Professor Ian Charles. He opened last year’s Invest in ME conference in London and was very supportive of the idea of a centre of excellence for ME to be within this new Institute. Building of the new £81.6m facility began in February, with an anticipated opening in 2018.

This is encouraging news, as our campaign was created to support the proposal by the UK charity Invest in ME (now also known as Invest in ME Research) to establish a Centre of Excellence for ME, based at world-renowned Norwich Research Park. We set out to help raise funds for the biomedical research aimed at developing diagnostic tests and treatments for ME (myalgic encephalomyelitis).

The focus of the Invest in ME Research strategy is on the role of infection and the immune system, including autoimmunity, whereby the immune system attacks the body’s own cells or tissues. The research began with the gut, as that is the site of most of the body’s immune system. The foundation study is looking at whether gut hyperpermeability (leaky gut) plays a role in this illness.

Meanwhile, clinical trials in Norway, presented and discussed at the annual Invest in ME Conference events, showed promise of rituximab, a drug used in blood cancer therapy, rheumatoid arthritis and some other autoimmune diseases. The charity decided to organise a UK clinical trial of rituximab, starting by studying B-cells in ME patients. The first paper from this research was published in February in the journal Clinical & Experimental Immunology. Click here to read more. So February was an exciting month for Invest in ME Centre of Excellence projects.

Also in the news (full story to follow shortly) was little star Makayla Nunn, as a result of her amazing efforts for ME Awareness and achievement as one of the top fundraisers on JustGiving. Makayla has more plans for this year and has set up her 2016 fundraising page here –

Stacy Hart held another of her fun competitions on our Facebook page to help raise awareness of our cause, but has had a rough start to the year and is not currently posting online, so we miss her Friday column at the Watford Observer. Thinking of you Stacy, and looking forward to having you back online with us soon.

Becca Hams & Ali Head ran another successful Secret Valentine. If you missed out .. sshh .. click here to join in Secret Easter 2016.

Joe Jarvis got started on four whole weeks with no added sugar to support his friend with ME, Simone. Read his sweet story here –

Jane Hurst was pleased to report that the total raised in 2015 by sales of her photocards and handmade cards was an amazing £606.22. (£175 of this – 50% of photocard sales will go to The 25% ME Group). Making cards is becoming increasingly difficult for Jane (vertigo, ever-present severe gut pain & other nasty symptoms of severe ME) but she usually has enough for 2 sales at Budgens each year, and their local Farm Shop sell her Easter cards and Xmas cards. Both have been great – so supportive. Jane’s Mum, Dad and brother take the card sales in shifts and Jane gets to count the money up when they return! After a sale in February, O’Flynns Budgens of Poringland commented on our Facebook page, “We received alot of positive comments from our customers about the day and we’re looking forward to next one already”. How lovely!

Catch up with 28 EU Marathons Man Mike Harley on Facebook here –

Our gratitude to Elaine English for embarking on a marathon of different kind – 1 blog per day for 27 days – to support Invest in ME Research & Macmillan Cancer Support. Catch up & follow here –

In training (ahem) for their Kilimanjaro Climb in March, Amanda & Richard hosted a wine tasting competition among 90 guests and raising an intoxicating £1470. Cheers everyone! Click here to see the excellent flyer they produced to help their sponsors to learn more about the illness they are so kindly supporting, and their fundraising page is here – Blog here.

Teresa Greenwood plans to give away seeds in return for donations to Invest in ME. Sow nice! Add yourself to the facebook group for more details on how to join in Seeds for ME: 

Calling Caterham .. to Joanna and her Vintage Violets Charity Catwalk for Invest in ME on Saturday evening, 2nd April. Click here for details –

Comedian Chris Brooker shows he is serious about raising awareness & funds for Invest in ME Research, by organising a Comedy Night for the second year running. Details on facebook here –

Kayleigh Kavanagh hopes to raise money for Invest in ME biomedical research funds by giving pieces of jewellery for specific amounts of donations (plus p&p) during May. She has created an event page for Facebook friends and will be setting up a page for donations nearer the time.

Ian Peters has set up his fundraising page for the Chester Half Marathon in May –

Thomas Waller has had ME for 5 years since the age of 11. He is taking part in Walk for ME 2016 and his page is here –

Mandy Stephenson is doing Walk for ME 2016 as her 15 year old daughter Katie has had ME for over 3 years. Thank you for reading her story here –

Invest in ME Conference Events span the beginning of June – keep up to date with news here –

Latest totals for Invest in ME Research Funds ..

£476k raised of £520k target for the B-cell / Rituximab Research

£164k raised of £200k target for the Gut Microbiome in ME Research

As ever, if we’ve missed anything, or if you would like us to highlight your event, write a guest blog, or have any questions, please contact us here, or find us on Facebook or Twitter. Well done everyone and thank you all so much for your support!

Thank You

January Updates

Big thanks to all involved in a superb start to the year and planning ways to support Invest in ME Research in the year ahead. Our patient-driven community campaign in support of this volunteer-run charity is totally inclusive of all ages and levels of severity of the illness Myalgic Encephalomyelitis (ME) and we really appreciate all the various ways you choose to support the progressive work of this small charity’s big cause.

With her writer’s hat firmly in place, Stacy Hart published her Friday column in the Watford Observer on New Year’s Day, and including this message from Invest in ME ..

French Author Voltaire  once wrote that optimism is the madness of insisting that all is well when we are miserable.

Yet Invest in ME (IiME) is optimistic that we and our big hearted supporters can build on our achievements from the past year, and all the work over the past ten years, and consolidate the foundation of research that we have which can finally treat myalgic encephalomyelitis (ME) and give people their lives back.

We are pleased to see that more and more ME is being talked about outside the usual ME circles – and in a positive way too.

Patients themselves are driving change.

In 2016 Invest in ME will focus on European collaboration and the establishment of a centre of excellence – and with just a little more support we can make this a reality.

We look forward to Dr Ian Gibson’s book – ‘Science, Politics and ME’.
In 2016 we hold the eleventh public International ME Conference and the sixth two-day International ME Research Colloquium – both in London in June.

At the time when the  NHS is being stretched to its limits it is even more important than before that ME patients can take part in shaping their own future.

Things won’t change overnight but good foundations are being built with the help of Invest in ME supporters who are selfless and resilient.

If optimism is madness then for 2016 we choose madness, we choose optimism, we choose progress.

We welcome 2016 and promise to work for the benefit of patients.

Bring it on.   Happy New Year to everyone.

As a music artist, Stacy goes by the name of Mama Chill. She interviewed fellow musician Skopje in January, reprinted here on our blog with their kind permission.

Vyvyan Weltiner, of Galderma in Clarendon Road, Watford, contacted Stacy to say that, having followed her Watford Observer column, they have chosen Invest in ME, along with The MS Society, to each receive a £750 donation from selling their old office equipment.

Tony Bradstock posted that the charity collection box at Coffee Cloud at Dickens Heath in Solihull had been emptied and that the money would be on its way to Invest in ME.

Joan McParland announced that 73 Northern Ireland branches of Boots Pharmacy would be receiving the Invest in ME Matchstick Campaign brochures in an information pack. You can read more in our January update on the Matchstick Campaign.

Sinéad Kearns decided to do Dry January for Invest in ME to show support for the upcoming Kilimnajaro Climb being done by Richard Pughe and Amanda Kayes in March. That’s not all they have planned for the year ahead, so watch this space for more news.

It’s really lovely to see supporters following on their support of Invest in ME with more events for 2016, as well as welcoming newcomers to the cause.

Walk for ME 2016 was launched in preparation for ME Awareness Week in May, and is again supporting Invest in ME. A few fundraising pages have been set up already, such as by Rachel Green & Chris, Jacqui Redmond, and Ellan Brown.

Having done a Reservoir Walk for ME last year, Amanda Buckley is doing a sponsored swim with her friend Rachael in May.

After their cycle ride for Invest in ME last year, Ash & Rob are doing a triathlon in May.

Ian Potter is once again doing a half-marathon along Hadrian’s Wall for Invest in ME, and for Sheffield Hospitals Charity and The Cystic Fibrosis Trust.

Mike Sutton is doing a Long Walk along the Camino de Santiago for Invest in ME as his friend Joel has ME. He raised an amazing £1000 in the first 24 hours of setting up his fundraising page, and matched that with another £1000. His new target is £3000. He wrote on his blog, “To say I’m blown away is an understatement – I was thrilled to tears – sobbing as I read the messages of support and having my faith in humanity rekindled to a blaze. Thank you so very much.”

Jo Smith has set herself a target to raise £500 for Invest in ME in 2016 by organising various things throughout the year and has set up a fundraising page.

Young Makayla Nunn has her sights set on raising yet more awareness and funds for Invest in ME, building on from her tremendous efforts and enthusiasm last year.

If you or anyone you know collects their loose change and would like to use it to support Invest in ME, Sue Page has extended ‘Small Change to Change ME’ for another year, on JustGiving and Facebook.

We updated our page on The Big Sleep for ME for May Awareness 2016.

28 EU Marathon Man, Mike Harley, posted his January Update, including a big shout to Tony Bradstock for creating a widely appealing promo picture, and for the 11th Invest in ME Conference (IIMEC11) in June 2016.

Alison Orr invited others to join her in setting up a shop on Phoenix Trading with profits to Invest in ME. Buying quality cards & stationery from her shop Cards for Invest in ME is a nice and easy way to generate donations to the charity at any time of the year.

Becca Hams & Ali Head got busy organising Secret Valentine 2016. The closing date is 2nd February, so don’t delay if you’d like to take part. Never forgetting our furry, feathered or scaly friends, this year there is also a Secret Valentine for Pets!

Looking for a Valentine’s gift for a loved one or to treat yourself?
Lynne Allan sells lovely hand-crafted jewellery online from her shop ME2UDezignz on Etsy, with donations to Invest in ME.

Click here for other ways to generate donations at no extra cost to you.

Spreadshirt has an offer of free delivery on orders of 2 or more items, ending 3rd February, using the coupon code: Coupon Code: 2LOVE

Seller profit from the whole range of products in all our shops below go directly to Invest in ME Research.

Let’s Do It for ME –

Let’s Do It for ME Design Your Own –

Invest in ME Charity logo products –

Make ME / Hug ME –

The Big Sleep for ME –

Stacy Hart is generously hosting another of her legendary competitions on our Facebook page, just for fun and to help raise awareness of our cause for Invest in ME.
Closes 3rd February.

Thank you for the direct donations in January to our crowdfunding for the Invest in ME Research on the role of the Gut Microbiome and B-cells/Rituximab.

Phew, what a start to the year!
Have we missed anything out?
Would you like us to feature your plans for 2016 or write a guest post for our blog?
Let us know in the comments or email us at or contact the charity Invest in ME (Research) directly at
Enter your email address below to receive our blog updates direct to your inbox.
Thanks so much for your support. Let’s make it a fabulous February!


(Click here for our review of 2015)

1st December – Giving Tuesday


Giving Tuesday is a growing worldwide movement. Please support our cause on this International Day of Giving. You can give your voice, your time, or a donation to Invest in ME Research. Donations to the charity may be made online, by text, by PayPal, Bank Transfer, Cheque. You can donate to a specific project or to the general Biomedical Research Fund. Every £1 counts at Invest in ME Research – the small charity run entirely by volunteers making great progress.

Gift Aid is an extra 25% of your donation from the government if you are a UK tax-payer, so please tick the Gift Aid box when you donate if this applies to you.


JustTextGiving (UK)

Text APFR99

£1-£5 or £10

to 70070

You can add your name and Gift Aid if eligible by text.

(any country, any amount from £2)

One Day – One Pound
(text donations add to the total raised on this page).



Bank Transfer

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



Send cheques payable to ‘Invest in ME’ to:

Invest in ME
PO Box 561,
SO50 0GQ

(add Gift Aid to your donation with Invest in ME’s Gift Aid form)

Please help spread the word ..

Let’s Do it for ME is a patient-driven campaign launched in 2011 in support of the proposal by independent UK charity Invest in ME (Research) to establish a centre of excellence for translational research and patient care based around Norwich Research Park in East Anglia; the first of its kind in UK/Europe and in collaboration with other leading UK and international biomedical researchers.

We help to raise funds for the biomedical research into myalgic encephalomyelitis that the charity is organising and/or funding in their development of the centre of excellence. Our crowdfunding for specific ME research is the first of its kind in UK and has inspired similar projects in Europe and USA. We have now helped to raise over £600,000 for the IIME Research strategy to develop and are aiming for £1,000,000.

The current focus of the research is on the role of the immune system, including infection and autoimmunity. Two major research projects are on the role of the gut microbiome and research on B-cells leading to a UK clinical treatment trial of rituximab.

Invest in ME Research is run entirely by volunteers who either have ME or are parents and carers of ME patients. They are driving the agenda of scientific research into diagnostic tests and treatments for myalgic encephalomyelitis in UK in collaboration with international researchers of world renown.

Thank you for your support.

Let’s Do It for ME!

in support of Invest in ME (Research)

Invest in ME International Conference & Biomedical Researchers Colloquium

IIME B-cell / Rituximab Research


One Day

Over £600k on Our Way to a Million!

A winning combination of philanthropy and proactive patient power has sped us past the £600,000 milestone on the way to our fundraising target of £1,000,000 for the charity Invest in ME Research biomedical research strategy.

Invest in ME Research announced that the Hendrie Foundation has kindly increased their funding pledge to the charity’s B-cell / Rituximab Research Fund by a further £50,000 to a total of £275,000 pledged.

Together with recent donations, including £10,000 from a sponsor wishing to remain anonymous, this generous gesture takes the current total raised by our community crowdfunding campaign to well over £600,000 and rising.

The Invest in ME Research Centre of Excellence translational biomedical research is designed to establish reliable diagnostic tests and effective treatments for myalgic encephalomyelitis (ME) to benefit patients and doctors alike.

Two current major research projects are: the role of the gut microbiome in ME at IFR/UEA; and the role of B-cells in ME at UCL, adding value to the current Phase 3 multi-centre clinical trial of rituximab in ME patients in Norway and leading to a UK clinical trial of rituximab in Norwich (Invest in ME Research update here).

Both projects include progressive national and international collaboration with clinicians and scientists involved in biomedical research. This collaboration is ongoing and facilitated by the Invest in ME Conference (IIMEC) and Biomedical Researchers into ME Colloquium (BRMEC).

If you already help to raise funds for this vital research strategy then we cannot thank you enough. We have long-term and severe ME and we are intent on helping Invest in ME Research to change the landscape of diagnosis and treatment of this disease for the next generation, as well as maintaining realistic hope for our own futures, thanks to their extraordinary vision and work.

If you are new to our site, then we extend a warm welcome and invite you to join us in our proactive support of Invest in ME Research charity’s work on establishing a Centre of Excellence for ME – the first of its kind in UK/Europe and with national and international collaboration. This is urgent and vital work.

The charity itself is run by dedicated volunteers working in their own time and without pay. Funds we raise are for their biomedical research strategy.

Please browse our site to find a number of ways you can help raise funds for the charity at no extra cost to yourself, such as using a referral link or cash-back site when shopping online, buying cards and gifts from supporters donating full or part profits to Invest in ME, braving the heat of the Chilli M.E. Challenge, or being sponsored for anything from going Facebook-free to climbing Kilimanjaro.

You can subscribe to our blog to receive updates by email. Contact us if you’d like to write a guest blog. Recent posts are also featured in our news stream.

Thank you for your support!


Further reading on our site:

March on a Million

IIME Research on Gut Microbiome

IIME Research on B-cells / Rituximab

IIME Conference & Colloquium

IIME Centre of Excellence