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The other ME microbiome project

UK-based Invest in ME, the little charity with the big heart and even bigger vision, continues to kick goals.

IiME’s ongoing microbiome project – investigating the roles of leaky gut and intestinal microbiota in ME – has moved up a gear with the announcement they are now funding future phases of this work.

…there is limited value in looking at or screening samples for the presence of inflammatory mediators or markers in isolation if the possible causes and origins are not known or investigated.

Late last year, as part of the project, IiME commissioned a three-year PhD studentship under the guidance of Professors Carding and Wileman – the culmination of two years of public fund raising, mostly by mums and dads, patients and friends.

Crucially, the study will analyse serum samples to gauge the integrity of intestinal barrier function in ME patients.

Also, novel technologies such as high throughput pyrosequencing and bioinformatics will be engaged to analyse the faecal samples of ME patients (selected using the Canadian Consensus Criteria). This information will contribute to a profile of bacteria and virus populations in patients, in other words, their microbiota profile.

Other parallel studies will assess microbiota metabolism using LC/MS/NMR analysis.

The project is being carried out at the UK’s University of East Anglia (UAE), teaming up with the Institute of Food Research and The Genome Analysis Center sequencing facility in the Norwich Research Park.

Comparisons with the Lipkin microbiome study

The encouraging news for ME patients in the US is that Lipkin’s microbiome project could get the green light provided that $US1 million in public funding can be secured.

The Lipkin study, to be carried out at Columbia University’s Centre for Infection and Immunity (CII) labs, is being enthusiastically supported by some ME patient groups.

On initial reading of it, the Lipkin proposal appears to be descriptive in nature – primarily restricted to an analysis of the different populations of microbes present in the gut of ME patients, with the future possibility of antibody and diagnostic tests.

Even if an altered microbiome is only a contributing factor in ME, hopefully Lipkin’s efforts will lead to treatment options.

Also there is the sense that Lipkin is looking at commercial opportunities downstream. Perhaps those who contribute to his study receive a share of the financial benefits of such enterprise?

On the other hand, the IiME study will cast a wider eye over the data it collects, also looking at the cause and consequences of altered populations of gut microbes in ME patients.

According to IiME: “From a therapeutic standpoint and needing to know more about disease causality there is limited value in looking at or screening samples for the presence of inflammatory mediators or markers in isolation if the possible causes and origins are not known or investigated.

“Our project will be testing the hypothesis that the originating source of inflammation in ME is the gut and the leakage of microbial products from the gut lumen across and through a compromised gut barrier, which then initiates and perpetuates inflammatory reactions throughout the body.

“If a “leaky gut” can be established in these patients and we can demonstrate that their immune system and blood lymphocytes have reacted to the presence of microbial products normally found in the gut, then this provides a means of formally identifying over-stimulated immune cells and lymphocytes as a cause of disease and the source of inflammatory mediators, and what their identity and mechanism of action is.”

IiME believe their study will result in more targeted and specific interventional therapies for ME.

‘No strings attached’ funding model

IiME appears to be one of the few groups genuinely interested in furthering biomedical research into ME.

This basically mums and dads-supported organisation manages to do this without government support.

The charity is relying on supporters to further fund the microbiome study, although it has not ruled out government funding as the project continues.

In recent years IiME has forged enduring relationships with other like-minded groups, including the Alison Hunter Memorial Foundation and Bond University in Australia, and the University of East Anglia.

In 2012 IiME convened the London Clinical Autoimmunity Working Group, to raise awareness of ME and promote clearer strategies for the collaboration, innovation and the foundations of biomedical research into ME.

Irons in the fire – Rituximab trial and the International Conference

IiME doesn’t just talk about what needs to be done for patients, they have some other big irons in the fire.

The charity is currently organising a UK clinical treatment trial of rituximab, to be led by Dr. Jo Cambridge at the University College London (UCL), with world renowned expert Professor Jonathan Edwards in the role of Advisor to the charity.

As part of fundraising for the rituximab trial, IiME’s 92 in 92 campaign kicks off on April 14 with the challenging concept of visiting all 92 football league stadiums in the UK in under 92 hours.

On another front, the 9th Invest in ME International ME Conference gets under way in London on May 30. This will again provide a platform for the latest biomedical research into ME from around the world. This year’s theme is ‘Mainstreaming ME Research’.

Further reading

Invest in ME
Lipkin Microbiome Study




Written by Russell Logan


Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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    • No worries Jan. I just wish I was well enough to do more. I will look at doing a write up for phase II.

      I am in awe of what Iime is doing. Cheers.

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