Welcome to IiMER Research Blog!

Invest in ME Research have created a page on their Centre of Excellence website for blogs by researchers funded by the charity to describe what they are doing, what experiences they have, what they think of research into ME, what they hope to achieve – and allow more communication with patients and the public.

IiMER hope this will help more people understand ME (Myalgic Encephalomyelitis) and the possibilities and opportunities which are available and being created by a strategy of biomedical research into the disease. You can comment on the individual blogs if logged in via Disqus, Facebook, Twitter or Google.

Kindly kicking off the new Research Blog is Katharine Seton, now in the second year of her PhD and based at Quadram Institute, the hub of the Invest in ME Research Centre of Excellence for ME.

Katharine describes her role in the research programme, the study she is currently focussing on, and explains why she has a personal investment and interest in ME research. Click here to read, comment, share: “Defining autoimmune aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”.

I aspire to help find a cure for ME … so watch this space!

Katharine Seton – Quadram Institute, Norwich

Katharine was among the PhD students speaking about their work at the charity’s 12th international biomedical research conference in London in June. Their presentations are on the IIMEC12 DVD available here.

(pictured above: Fiona Newberry, Shen-Yuan Hsieh (Ernie), Katharine Seton)

Fane Mensah, currently doing his PhD at UCL, also presented at IIMEC12.
The Research Blog includes articles by Fane that were previously published by IiMER as newsletters, so if you missed these, or would like to comment, they are ME/CFS – Through The Eyes of a Young Researcher (first posted January 2015) and Research News from Fane Mensah (first posted February 2017).

(pictured above: Fane Mensah, Christopher Armstrong and Isabelle de Rooij)

Thank you all involved for your support!

Please share widely: http://www.investinme.org/ce-research-blogs.shtml

Invest in ME Research Centre of Excellence for ME

Posters P10a-gwhite Cresearch

Invest in ME Research is an independent UK charity facilitating and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME) as defined by WHO-ICD-10-G93.3. and promoting better education about ME.

The charity is run by volunteers – patients or parents of children with ME. Like their growing number of supporters, they have big hearts and a determination to get the best possible research to be carried out to find the cause of Myalgic Encephalomyelitis and develop treatments.

Invest in ME Research has links nationwide and also internationally; is one of the founding members of The European ME Alliance of like-minded organisations; and organises and hosts an annual international public ME conference and a colloquium by invitation for biomedical researchers working currently or potentially on Myalgic Encephalomyelitis (or ME/CFS).

Invest in ME Research wish to establish a Centre of Excellence for ME – a centre which would exist to bring discovery, knowledge, and effective treatments to patients with ME and possibly, in future, other illnesses that are caused by acquired dysregulation of both the immune system and the nervous system.

The proposed centre would become a Centre of Excellence in the treatment of ME in Europe and would attract researchers, physicians and healthcare staff from around the UK and Europe and USA.

It would also allow other Centres of Excellence to collaborate with each other.

The proposed Centre of Excellence will be based at Europe’s largest grouping of scientific institutes – Norwich Research Park. The centre will form a hub for a strategy of research into ME in UK and Europe, linking in other academic institutes and researchers, sharing knowledge, forming collaborations, training medical students, improving education and generally fast tracking research into ME.

The clinical arm of the Centre of Excellence was delayed by NHS reforms disbanding PCTs and restructuring with new personnel through the new CCGs. The research strategy was enabled to begin by samples kindly provided by patients of Dr. Amolak Bansal, leader of the specialist service in Surrey, and by the charity raising the funds with supporters and the Let’s Do It for ME campaign.

The 3-year foundation study of the research strategy began in 2013 by investigating the possible role of gut hyperpermeability (leaky gut) in ME. This work is led by Professors Tom Wileman and Simon Carding at the Institute of Food Research, working with PhD student Daniel Vipond and former medical student, now qualified doctor, Dr. Navena Navaneetharaja.

Research on the role of B-cells in ME, prerequisite to a clinical trial of the monoclonal antibody Rituximab, began in 2014 and Invest in ME Research announced shortly after that it was felt worthwhile to extend this research, which is being led by Dr. Jo Cambridge at University College London, with PhD student Fane Mensah, and with Emeritus Professor Jonathan Edwards acting as Advisor to the charity on a clinical trial.

International collaboration is facilitated by the annual Invest in ME International Conference and Biomedical Resarchers into ME Colloquium, and now also by the European ME Research Group formed by the European ME Alliance, which is a member of the European Federation of Neurological Associations.

So the work is underway to lay the foundations for a better future for people with ME. The Centre will continue to perform translational biomedical research on ME, conduct clinical trials, validate treatments, and will help to bring lives back to millions of patients currently left without any healthcare. Next steps..

May 2016 marked 10 years since Invest in ME registered as a charity.

They said, “We feel the best way to celebrate our 10 years anniversary is to try to finish what our supporters have helped us begin. To begin a new decade of Invest in ME research we are announcing our new campaign to establish the Centre of Excellence on firm footings and fast track biomedical research into ME. We invite people to support our Centre of Excellence proposal.”

They published their new poster in the Journal of Invest in ME Research included in the pack for delegates at their 11th Invest in ME Conference held on 3rd June 2016 and have since launched a website for the Centre of Excellence with easy ways to show support. Let’s C Research! #CofEforME #LetsCresearch


IIME Rituximab Research Fund Tops £480k

Thanks to multiple generous acts & fundraising by individuals and organisations including amazing generosity from the Hendrie Foundation pledging a huge sum toward the Rituximab Trial and B-cell Research being organised by the charity Invest in ME (Research) the amount raised is now £484k towards the £520k target. This includes the research either now published, currently underway, or going to be performed. Please click here for details & ways to donate or pledge to the IiME Rituximab Research Fund or read on for the Layman’s Summary of the first paper now published in the journal Clinical & Experimental Immunology.

Following the recent publication of the first paper on the research at University College London (UCL) into myalgic encephalomyelitis (ME) initiated and funded by Invest in ME (IiME) and supporters, the charity asked Dr. Jo Cambridge and Fane Mensah from the UCL team to explain, in layman’s terms, what the paper was describing. The paper is ‘Extended B cell phenotype in patients with myalgic encephalomyelitis/chronic fatigue syndrome: a cross-sectional study‘ – http://onlinelibrary.wiley.com/doi/10.1111/cei.12749/abstract;jsessionid=C57DA1EB5B711D2BEA9C3A468F138C81.f03t02

Here is their Layman’s Summary –

We would like to thank all the patients – and their friends and families – for participating in the UCL B Cell Phenotype study.

As a result of their generous donations of time and blood, we are delighted that our B cell Research Programme (funded by IiME) has been compiled and accepted for publication in a peer reviewed journal, Clinical and Experimental Immunology.

This is the official Journal of the British Society of Immunology (please find a PDF copy attached).

The initial aim of our studies was to investigate whether there was any difference between surface markers expressed on B cells from patients with ME/CFS and those from age and sex matched healthy controls.

We looked at the % cells positive and also the number of markers per B cell, of 18 different markers expressed on B cells.

As you are aware, promising results have been reported from Norway in 2 earlier B cell depletion (Rituximab) trials and we are investigating many aspects of B cell function which may indicate, firstly, why Rituximab seems to work and to also identify patients most likely to benefit from this or related therapies.

In our study we have found no significant differences between the 10 traditional B cell subsets of ME/CFS patients compared to those from controls.

We then added in additional markers in order to further extend this characterization.

Here we did find an increase in a molecule expressed on ‘new’ B cells, that is the ones most recently exiting the bone marrow.

This is a differentiation marker called CD24.

CD24 polymorphisms (genetic changes) have also been described in different autoimmune diseases.

CD24 is a cell ‘adhesion’ molecule which is involved in the way B cells interact with other cells and with their surroundings.

This marker is important in the early stages of B cell maturation, where it is also at its highest expression and it is where we have found the differences.

We have also found another B cell phenotype which may be related in a negative way with disease duration.

We hope to extend these studies to other ME/CFS cohorts in other centers.

We will now continue to investigate the functional consequences of these changes in CD24 expression to get a better picture of what these findings may mean in relation to ME/CFS symptoms and in relation to what is found following Rituximab therapy.

By Dr. Jo Cambridge & Fane Mensah at University College London.

(original source – http://www.ukrituximabtrial.org/Rituximab%20news-Mar16%2001.htm)

Dr. Jo Cambridge and Fane Mensah will be involved in the charity’s 11th international Invest in ME Conference (IIMEC11) & 6th Biomedical researchers into ME Colloquium (BRMEC6) in London in June, along with biomedical researchers from at least 15 countries. It was attendance at these events by Professor Jonathan Edwards and Dr. Jo Cambridge that led to this work being undertaken at UCL enabling Invest in ME to honour their commitment to initiate the rituximab and B-cell research.

Thanks to everyone supporting the Invest in ME Research strategy of high quality biomedical research, international collaboration and the development of the Centre of Excellence for ME which is gathering pace, and managing to change the landscape of research into ME once and for all.


LAST UPDATED 7th May 2016