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“tantalised the conference with news of an as yet unpublished study, using microbiome metabolites as biomarkers, that has achieved 100% accuracy in diagnosing ME/CFS.”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

The Longest Tennis Match Ever!




On 7th July 2016, Amanda Kayes wrote,

This Saturday I am umpiring a 12 hour continuous tennis match in order to beat the longest ever recorded tennis match record (Mahut v Isner) of just over 11 hours! I am being assisted by the wonderful kids and adult members of Knaresborough King James’s Tennis Club who are playing in 1 hour rotations whilst also trying to raise money. I can’t sit still for 10 minutes so 12 hours will kill me but I will do it in order to raise money for the wonderful charity Invest in ME.

Why this charity?

Well in 2002, my brother, Paul Kayes, was struck down with M.E. (Myalgic Encephalomyelitis) following a virus. He was very fit, active, had a good job, a loving wife and two children, yet this illness showed no mercy as it gripped his body and as a result, for the last 13 years he has become virtually housebound and most of the time is confined to his bed. His only hope is that a cure for ME is found.

Invest in ME is run on an entirely voluntary basis by sufferers and parents of children suffering from M.E. Every penny they receive goes towards finding the cause and cure for this horrible illness whilst also trying to educate health care organisations and the public. Their most recent push is to raise funds for Biomedical Research into ME and have already laid foundations for a UK Centre of Excellence for ME Research. We want to help them take a step closer to reaching their goal, so that one day soon, a cure can be found to help my brother, and other sufferers, to get their lives back. We also want people to understand more about M.E. so its sufferers don’t feel so misjudged.

Looking forward to the big match on Saturday and raising as much money as possible for this amazing charity! 12 hours of sitting still can’t be worse than 14 hours of climbing up and down the summit of Kilimanjaro in the snow whilst throwing my guts up!!! But can we beat the record for the number of games played??? I think we can!!! Please read my story on JustGiving and if you could spare a few pounds to sponsor me I’d be so grateful.

UPDATE 9th July 2016: Amanda Kayes wrote….
“We did it!!! 12 hours of a continuous singles match and 8 hours of a doubles match, beating both records for the longest match and also the number of games played (we played 220 games in the singles match, beating the record of 183 games, and 133 games of doubles beating the record of 91 games)!!! We got pretty soaked but the kids and adults taking part were not phased by the puddles! Amazingly, on the stroke of 12 hours, the score between team Mahut and team Isner was exactly 110 games to 110, so a draw overall! So far we’ve raised £635.50!!” Huge thanks to Amanda and her record-breaking tennis superstars –



Lucy’s Forgetmenot Quilt Raffle

1c5b78f1-9055-470b-847a-1e38c4d8c35a By Lucy Macdonald

I am raffling this handmade lap quilt for Invest in ME because funds are needed for important research into M.E.

This lap quilt (58″ square/157cm square) was made with love to raise funds for research into the chronic illness Myalgic Encephamyolitis (M.E.). I have suffered this illness for over twenty two years now in varying degrees. It was only in my better days that I was able to make this quilt. It is heavily machine quilted with a impromptu feather and flower design. It also bears the blue ribbon logo which is worn in awareness of M.E. The materials used are cotton fabric for the front, back and all threads. The wadding is polyester. This quilt was made in a house where cats and a dog reside but I have made sure the quilt is thoroughly clean before posting to the happy winner of the raffle.

£1 per ticket…raffle drawn on 11th Aug 2016

The code to donate by text to 70070 is: LFQR67 £1 or any amount, it’s £1 per entry. If you donate by text please contact me via email so I can issue you with raffle number/s.

I will notify you of your raffle ticket number when I see your donation to my JustGiving page. If you prefer to remain anonymous on this donation page please contact me via email or other messaging site if you know me with the amount donated immediately after donating so that I can issue you with a raffle number/s.

I will contact you as soon as I can after the raffle has been drawn on 11th August 2016. Lucy’s Forgetmenot Quilt Raffle –

Thank you for your support!

Essentially Zoe

essentially local magazine July/August 2016
essentially local magazine
July/August 2016

Zoe Johnson’s story features in the fittingly Olympic July/August edition of Essentially Local in which the Milton Keynes magazine is celebrating amazing achievements, not just sporting ones, but of inspiring youngsters.

Nominated by her outreach tutor, Zoe was shortlisted for Young Role Model of the Year for her charity fundraising for Invest in ME, and the rest of her work towards her Duke of Edinburgh Bronze Award, and her huge efforts to do her online lessons. Sadly, Zoe was too ill to attend the award ceremony on 29th June, but heard from her outreach tutor that, although she didn’t win, she got a big cheer and will get a certificate sent to her in due course.

Mum Rachel Johnson said,
“She set herself a target of £250 at the beginning of all this and didn’t really think she’d get that. Today she is up to £2025 for Invest in ME, plus £129 from a cake stall for Smile for ME. I’m so proud of everything she has achieved when she is struggling so much – life with M.E is tough and we desperately need proper answers, so every penny helps and Zoe really wants to make a difference.”

The following article by Rachel Johnson was published on About My Area on ME Awareness Day 12th May 2016.

Zoe Johnson is raising money for Invest in M.E!

Can you help Zoe reach her target of £1500 for a sponsored haircut? All money raised is being donated to Invest in M.E (, a registered UK charity who fund biomedical research into M.E and train medical professionals. The hair is being donated to the Little Princess Trust who make wigs for children affected by hair loss due to cancer treatment.

Zoe is a 14 year old girl who has M.E (sometimes called Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome). This is a life-altering neuro-immune condition. There is no treatment, no cure and no clear prognosis. Some people do spontaneously recover after a period of time. Many people get better but never regain full health. And others are permanently disabled.

Prior to her illness, Zoe was an active Scout who loved hiking and camping. She played the flute and enjoyed street dance, climbing, sleepovers, family days out, spending time with friends, cinema, shopping – all the usual. She was enjoying life at secondary school, taking advantage of all the opportunities that came her way. Just a normal, happy, healthy girl…

In February 2014 she caught a flu-type infection and just didn’t recover. She hasn’t been full time at school since then and had to stop attending altogether in October 2015. She has had to stop all her favourite activities, even just spending time chatting with friends leaves her exhausted for a couple of days.

Zoe says “M.E has turned my life upside down. Its left me practically housebound and I have to use a wheelchair when I leave the house. It’s not just being a bit tired, its total exhaustion like you’ve got really bad flu. Not the ‘bit of a headache and runny nose’ type thing that people call flu, but the real flu that makes your whole body hurt so much that you can’t move and leaves your brain full of cotton wool so you can’t think straight. It also comes with a range of other debilitating symptoms such as nausea, palpitations, headaches, dizziness, inability to control body temperature and its quite tough emotionally too. The slightest exertion makes it all worse and nobody can tell me why I got this or when I will get better.”

However, despite all her difficulties, Zoe has started working towards her Duke of Edinburgh Bronze Award. For the Volunteering section she has chosen to spend six months raising awareness of M.E and fundraising for M.E charities. The first event is the sponsored haircut and she has other events planned over the next few months. Please support Zoe by making a donation via her page on JustGiving, and by sharing her story.


Zoe’s big haircut took place on 17th June – click here for more photos.

A further £895.78 was raised by a non-uniform day in October, bringing the total raised by Zoe Johnson in 2016 to a whopping £2965.78!

Well done Zoe and thanks to everyone supporting!

June Updates

june updates banner

A very busy first week of June saw the hugely successful international Invest in ME Conference Events, held by the charity in the heart of Westminster, comprising a two-day workshop for the world’s leading and emerging biomedical researchers; meetings of the European ME Alliance of patient organisations and their recently formed European ME Research Group; and the public conference on 3rd June, which generated a lot of excitement. The charity was quoted by columnist Stacy Hart as saying, “It is a wonderful mixture of dedicated researchers, clinicians, patients, carers and patient group representatives from all over the world that attend these events each year to brainstorm and collaborate for a better future for ME patients. There is a sea of change happening in the ME world and we hope it is not too long that patients and their families can reap the benefits for real.” Conrad Bower was first off the blocks with an excellent article on the conference, published in The Canary and we were really pleased to see that he chose images by Wolfgang Stiller that feature in the charity’s Matchstick Campaign

The second paper from the Invest in ME Research strategy was published on 6th June in the Journal of Clinical Medicine. It is a comprehensive review of the current evidence of infectious aetiology and a proposal for future research. The article is titled A Role for the Intestinal Microbiota and Virome in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?.
We will write more about the research updates soon.

An article about Kate Mincher’s Famous Five (Sam, Christina, Nicole, Matt and Miles) appeared in their local paper on 1st June and is also online here with great pictures of their sponsored walk from Stroud to Cardiff.

Kate posted on Facebook, “Love to everyone involved with Invest in ME and good luck with the activities in London this week”.

Also in print was an article by Laura Chamberlain in the June issue of Vintage Life Magazine. Laura’s Pen has been busy. She wrote a great post for Black Dress Day and now has a printable version of her comic ‘The ME Adventures’.

We published a pdf version of Amy Stone’s hand-painted ‘ME Mythbuster’s’ cartoon. Amy wants it to be used to raise awareness and funds for Invest in ME Rituximab Research (which begins with B-cell studies. First paper is here).

Sophie Tennent has also set up a memorial page on JustGiving in response to the waves of shock and grief through June at news in quick succession of deaths of members of our global community of people with Myalgic Encephalomyelitis, from Australia, Canada, USA and UK. Our deepest sympathy to all their families and friends. Makayla Nunn did her Horse for Walk for ME 2015 on behalf of others too ill to walk or had lost their lives, with as many names that would fit printed on the back of her T-shirt. This is also the second year running that she took part in Black Dress Day held on 31st May and we thank all who joined this inspirational little girl in taking part or supporting this year.

Makayla Nunn continued her Walks with the Animals in June. This year she has so far walked with an alpaca, a tortoise and a donkey! Makayla is also one of the Hidden Voices of ME, which has had over 1500 views so far, and received a well deserved amazing award from Sophie Tennent in June. You can support Makayla’s 2016 fundraising for Invest in ME on JustGiving here.

14 year-old Zoe Johnson is another member of the growing band of brave young people determined to help the charity to create a better future for sufferers of all ages of Myalgic Encephalomyelitis. Her outreach tutor has nominated Zoe was shortlisted as a finalist for Young Role Model of the Year, nominated by her outreach tutor for her fundraising for Invest in ME (and for the rest of her work towards her Duke of Edinburgh Bronze Award, and her huge efforts to do her online lessons). Zoe had her long locks cut off in June for Invest in ME and you can see the stylish before and after photos here.

The Invest in ME Research Gut Microbiome Fund received a big boost 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. You can see their donation and comment on our JustGiving page.

There was another special referral offer on Top Cashback. Paul Kayes has raised £350 plus Gift Aid with this method of fundraising for Invest in ME so it’s well worth a look along with various other ways to raise funds for free for the charity.

Paul Kayes has also organised a Euro 2016 Charity Sweepstake for Invest in ME Research. Thanks everyone supporting his event on Facebook and JustGiving.

While everyone was hard at work at the London conference events, Mike Harley was busy in Stockholm raising awareness and funds for the charity’s world class research by running the 6th of his 28 EU Marathons. He thanks to everyone who dropped a coin in the charity box at the conference raising an extra £126!

After the result of the UK EU Referendum, Mike told Eddie Izzard on Twitter, “We may be leaving the EU but I’ll continue running marathons in every country in it for Invest in ME”. Next on Mike’s agenda is Poland.

A big thank you to Ian Potter for once again running the Hadrians Wall Half Marathon on Sunday 26th June.

Thanks to editors Eddy Keuninckx and Rob Wijbenga for including some of the above in the June issue of The Global M.E. Chronicle.

A BBC report on the 30th June release of an audio drama produced by Barnaby Eaton-Jones was in the Top Ten Most Read / Most Popular for news articles. Barnaby’s guest blog for our Nomenbar for ME Movember Awareness of men’s health was among those we reposted on Facebook in June for Father’s Day.

Stacy Hart is another writer who regularly makes it the Top Most Read with her column in the Watford Observer. Due to changes and ongoing technical problems with the online news outlet, she may have to permanently relocate her articles. She published her 1st July edition here on her blog.

As we are late publishing the June Updates, many thanks all who donated on 1st July to our monthly One Day – One Pound fundraiser.

Big thanks again also to actor Jon Campling and fellow Comic Con-ers at Hull in June for raising yet more awareness and an extra £78 for Invest in ME Research Funds. Next Comic Con stop in July – Southampton. He will be in Bitterne on Sunday 3rd July for selfies, autographs and fundraising for Invest in ME.

Click here to take advantage of a golden opportunity in July to join Alison Orr’s winning team of Phoenix Traders for Invest in ME.

Find out what’s in store for jewellery by Lynne Allan on Etsy at ME2UDezignz

Finally, thanks everyone who signed our card to congratulate Invest in ME on their tenth anniversary as a charity. Speaking of anniversaries, July 2016 marks five years since we launched the Let’s Do It for ME campaign to support the proposal by Invest in ME to establish a UK/European Centre of Excellence for ME. So watch this space for a series of blog updates this month as we reflect on the progress that your support of the campaign has helped the charity to achieve so far and on next phases of the Centre of Excellence projects.

Meanwhile, you might wish to like the new Invest in ME Research page on Facebook and follow their new CofEforME page on Twitter. Signing off for now courtesy of Jon Campling..

Thank you everyone for your support!