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£200k target hit for IiMER Gut Microbiota Fund!

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You’ve done it again!

We are pleased to announce that another target for our crowdfunding campaign for a strategy of biomedical research into ME has been reached.

This update to our gut microbiota and related projects fund being performed at the UK Centre of Excellence for ME hub in Norwich Research Park brings the total raised so far for projects there to £200,000.

The research found, funded and facilitated by Invest in ME Research is the result of dedicated, generous and determined supporters who have not just given money but, also huge amounts of time and effort toward helping us change the direction of research into ME in UK and Europe.

The latest target has allowed us to fund two PhD studentships currently undertaking research at the Centre of Excellence hub in Norwich Research Park and allowed us to decide to commit to the future funding of another PhD at the Centre.

Please click here for the full update by Invest in ME Research giving details of the latest study in the biomedical research programme and other projects related to the UK Centre of Excellence for ME, and a message to you from the charity’s Chairman Kathleen McCall: http://www.investinme.org/ce-news-1709-04.shtml

We supporters at Let’s Do It for ME would like to thank the Trustees and Scientific Advisory Board of Invest in ME Research for their vision and dedication, and everyone working with them to establish diagnostic tests and medical treatment options for some 250,000 people with ME in UK and millions around the world.

Our thanks to each and every individual, family, group, team, organisation or company contributing to this vital research and supporting by whatever means.

Let’s keep doing it for ME!

We now have a fundraising page on BT MyDonate: https://mydonate.bt.com/fundraisers/fundraising4me1

Severe ME day 2017; Sophia Mirza, inflammation of the brain and spinal cord and the role of the gut

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Severe ME day is an initiative of the 25% ME group for the severely affected. 


It is held annually on 8th August to commemorate Sophia Mirza’s birthday and it’s purpose is to remember and raise awareness of those deceased and severely affected by ME. Sophia Mirza (1973 – 2005) died in distressing  circumstances in November 2005.  The coroner was specific about the medical cause of Sophia’s death and it was recorded as 1a) acute anuric renal failure; 1b) CFS. The second cause was recorded as including dorsal root ganglionitis. Sophia died as a result of acute renal failure arising as a result of ME/CFS.

However there have been a few members of the ME community who’ve seemed keen to place the cause of death on acute anuric renal failure as a result of dehydration. These people are obviously ignorant of the fact that death in dehydration is caused by brain swelling, not renal failure. Sophia’s brain was perfectly normal under standard autopsy examination with no signs of swelling. Her death was as a result of end organ failure as the result of ME.This is not an unheard of before phenomenon in ME/CFS either.

It wasn’t, as has also been claimed, the first known death as the result of ME/CFS.  ME is described as “benign” but this only means non-fatal in the short term. Even though the pathology precipitating death varies widely, as early as 1957, Dr Andrew Lachlan Wallis reported the post-mortem histopathology on a female from Cumbria who had died of ME; the report can be found in Wallis’ Doctoral Thesis (held at the University of Edinburgh and essential reading for anyone with an interest in ME/CFS; see also “Vade Mecum” by E. Marshall and M. Williams; Co-Cure ACT: 29th June 2005, which contains a summary of the thesis). The histopathology report states:

“There are in the entire diencephalon, particularly around the third ventricle, numerous small haemorrhages, which extend into the adjacent parts of the mid-brain. Similar haemorrhages can be seen in the corpora mamillare. The haemorrhages are mostly around the small vessels but some are also to be seen in the free tissue. This is a significant finding”.

In ME/CFS, males die predominantly from cardiac failure and females die predominantly from neurological complications, sometimes manifesting as tumours, and both sexes may die from pancreatitis. A memorial list can be found on the CFIDS website.

The secondary recorded cause of death in Sophia Mirza’s case was dorsal root ganglionitis. This is not surprising as inflammation of the brain and spinal cord is an important part of the ME pathology and indeed what the name Myalgic Encephalomyeitis (M.E) stands for;

  • My = muscle
  • Algic = pain
  • Encephalo = brain
  • Mye = spinal cord
  • Itis = inflammation

Much of this information I gathered from the document “INQUEST IMPLICATIONS? By Eileen Marshall and Margaret Williams, 16th June 2006” which concludes 

“To deny the existence of inflammation in ME/CFS is to deny reality, for which some UK psychiatrists (and those members of the medical profession who support their ill-founded notions without bothering to consider the actual evidence) are notorious.

The only way forward is biomedical research, but it seems that in the UK, science and humanity count for nothing when dealing with those blighted by the devastation of ME/CFS. 

This was concisely exemplified by Professor Peter White’s remarks to Dr Vance Spence at the third Oral Evidence Session of the Gibson Parliamentary Inquiry into ME/CFS on 7th June 2006, which were words to the effect that:
 “If WE hadn’t got the money, do you really think that the MRC would have given any money to YOU?”.

It seems inevitable that there will be many more cases like that of Sophia Mirza.”

However Eileen Marshall and Margaret Williams underestimated the strength, conviction and perseverance of the ME/CFS community!

That’s enough about the dying, now let’s turn our attention to those who are currently surviving severe ME/CFS.

One of IiMER’s foundation research projects, “A ROLE FOR A LEAKY GUT AND THE INTESTINAL MICROBIOTA IN THE PATHOPHYSIOLOGY OF MYALGIC ENCEPHALOMYELITIS”, aim was to find out weather there were any apparent changes in the intestinal barrier function and/or microbiota of people with ME and whether microbe-driven inflammatory responses can provide an explanation for the pathophysiology of ME. It is the foundation research project in their proposal for a research and development facility which could lead to a UK Centre of Excellence for ME in Norfolk.

Autoimmune reactions lead to inflammation, increased permeability of blood vessels (as has been found in ME patients, described above) and migration of lymphocytes to sites of injury. Microglia within the brain can be primed during chronic inflammatory diseases, but can then induce inflammation in the brain when they are triggered by a second inflammatory challenge such as a systemic microbial infection. This raises the possibility that the damaging neuro-inflammation seen during ME may be triggered by systemic infections.

The gastrointestinal tract contains a microbiota consisting of a vast number of bacteria and viruses. The microbiota can influence intestinal barrier function and host defence against microbial challenge. Changes in the microbiota can cause local and systemic chronic inflammation.

This research has included people who are severely affected. It is being led by Professor Simon Carding at the Norfolk institute of food research/ UEA. As there has been no ME specialist in Norfolk since 2007 (something I know only too well as I live in the area and have had to cope without a local specialist consultant for the past decade) and the research requires a named doctor, patients providing samples for the research are under the care of Dr. Amolak Bansal of Epsom and St. Helier NHS Trust in Surrey. The researchers from Norfolk have been traveling down to Surrey to take samples from the house/bed bound patients and from house-matched healty controls to filter out what’s shared in the microbiome from shared environment.

There are now two more research projects undergo in IiMER’s Gut research project. Find out more

What’s more the whole of the first £100,000 of the first foundation research project was raised by “Let’s do it for ME”, a patient driven campaign to raise funds for biomedical research into ME/CFS. Many of the patients who raised it are severely affected themselves. The two later research projects are being funded jointly by IiMER’s LDIFME campaign and the universities involved.

References 

Any views expressed in this blog post are those of the blog author R. Amor and not necessarily those of IiMER or LDIFME 

My Story by James Wythe

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james-wythe

My name is James Wythe, I’m 27 and currently living in the Bournemouth area, I have developed a passion for healthy living and cooking after falling very ill 6 years ago. My new blog focuses on gluten, wheat, dairy, egg and sugar free foods. Most of my time is spent either in the kitchen creating quick and healthy allergy free meals or thinking about new dishes I can make. Here is a link to my blog. www.healthylivingjames.co.uk

It all started when I fell ill in December 2010 just after completing my sports science BSc Degree at Bournemouth University (where I was playing golf for the University and also the Dorset County 1st team). I thought my illness was just a touch of food poisoning but for some reason I didn’t recover and the symptoms just seemed to get worse and worse. I tried to push through this but reached a point where I had to be rushed into hospital for suspected brain tumour. I had several brain scans but I was so weak at that point having lost nearly 3 stone in weight that I couldn’t eat, drink or even stand up!

On my third trip to hospital I was kept in for 11 days. I was tested for everything they could think of, however all the tests came back “normal”. At that point I had also become hypersensitive to more and more of the medication they were giving me. I also had a severe allergic reaction and developed a sensitivity to light, smells and certain foods. The doctors were unable to give any diagnosis apart from saying that I had some kind of viral infection, so they just sent me home and told me to rest and take it easy for a while.

I did go home and rest, unfortunately I didn’t recover or feel any better, in fact I just got worse. I was bed bound, unable to stand up or walk by myself. I couldn’t watch TV or look at my phone as I was extremely sensitive to the light which would give me awful headaches but to make matters worse, I suffered with severe insomnia often going days without any sleep at all. This made it impossible to see my friends and made me feel really isolated.

After multiple attempts to get help from the doctors they finally, after nearly 6 months, diagnosed me with M.E. (Myalgic Encephalomyelitis) also known as CFS (Chronic Fatigue Syndrome). I was told there was no “cure” and all I could do was rest and wait.

I started to follow some Facebook pages about M.E to gain more knowledge and came across a page called Let’s Do It For M.E (LDIFME) who were raising money for UK charity Invest in ME to do extensive research into the illness particularly into the gut. Over the next few months I contacted all friends and family members and managed to raise £3000 (The charity raised funds to match the donation making a total of £6000) towards the research which really helped them hit the £100,000 goal they had set. If you wish to donate to this charity or find out more about M.E then go to ldifme.org/foundation-research-project/

Continue reading James’s story here – http://healthylivingjames.co.uk/my-story/

Double the value of your donation to Invest in ME Research at
Matching Movember – justgiving.com/fundraising/Geoff-MMO

Find other stories for our Movember Awareness of Men’s Health at Nomenbar for M.E.

Huge thanks to everyone for your support!

Review of Invest in ME Gut Research – what next?

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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

JustGiving – justgiving.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)