Your Input Needed for 2020 Public Engagement Event

Invest in ME Research and Quadram Institute are arranging a Public Engagement Event in Norwich on 7th February 2020 and are inviting patients, carers and supporters to send them any input to the meeting.

They are collecting information now in order to plan the agenda. If you have specific issues or questions that you feel should be addressed at the public meeting then please use the contact form on this page.

Supporters will know that work has been ongoing to establish a Centre of Excellence for ME (Myalgic Encephalomyelitis) based at Norwich Research Park, which houses Norfolk and Norwich University Hospital, University of East Anglia, Norwich Medical School, Earlham Institute (formerly The Genome Analysis Centre) and the new Quadram Institute.

Invest in ME Research is run by volunteer parents and patients. The charity published a detailed proposal for a centre in 2010 and began crowdfunding in 2011 to enable the biomedical research programme to get underway in 2013. The next phase is a clinical treatment trial of faecal microbiota transplantation for ME planned to start in 2020.

IiMER and QI are keen to discuss the planned research with patients and carers, and wish to get views and additional insights to help them shape their future research. They will be discussing logistics for this meeting and will be meeting in the New Year to plan the event.

Please contact them through the contact form on this page.

The meeting itself will be on the morning of 7th February 2020 (the likely time being 10:30 – 12:00) in the new Quadram Institute building near the Norfolk and Norwich University Hospital; postcode NR4 7UQ.

More details will be provided nearer the time.

Many of us are too ill to leave our homes or are unable to attend meetings in person for other reasons, but please do take this opportunity to share your thoughts and ask any questions to help shape the agenda.

Let’s Do It for ME is run by severely ill patients supporting Invest in ME Research and their Centre of Excellence for ME projects.

Day 23 of the Invest in ME Research Advent Calendar is about the Centre of Excellence for ME so you can read more about it here.

Link to the meeting info and contact form here.

Thank you for supporting Invest in ME Research!

PRESS RELEASE: £500k Pledged by IiMER!

Invest in ME Research has announced a pledge by the charity of £500,000 to the biomedical ME research underway at Norwich Research Park.

As far as we know, this is the largest single pledge for biomedical research into Myalgic Encephalomyelitis ever made by a charity in UK!

IiMER Press Release
Quadram Institute News

The pledge covers joint funding of a PhD position in partnership with University of East Anglia and over 70% of the required funding for a clinical trial of Faecal Microbiota Transplantation being performed alongside other high-quality biomedical research at Quadram Institute.

Invest in ME Research pledged £435,000 towards the FMT trial earlier this year, so this new pledge represents an increase, thanks to the efforts of the charity and their supporters, including patients, carers, parents, friends and families affected by this disease. On their page describing the recent Centre of Excellence projects, IiMER write,

“The efforts of our supporters are exemplified in the Let’s Do It For ME campaign – started by three severely affected patients from their homes. They have enlisted friends and families to join with Invest in ME Research to create a grassroots movement to fund biomedical research into the disease, and thereby compensating for the meagre offical funding that has been given to research into ME over the years.

Invest in ME Research will now have funded or part funded five PhDs performing research into ME and working in partnership with researchers to initiate a foundation of high-quality research in one of the largest and most prestigious research parks in Europe.” Read more: investinme.org/pr01-Dec19.shtml

The press release is announced on Day 2 of the charity’s Advent Calendar.

Together we have helped raise and pledge over £900,000 for Invest in ME Research since the Let’s Do It for ME campaign launched in support of the charity’s plan to establish a UK/European Centre of Excellence for ME.

This includes a hugely generous pledge to the charity from The Hendrie Foundation towards a clinical treatment trial and their substantial donation to the B-cell ME research performed at UCL. We are enormously grateful to the foundation and to everyone supporting the development of the Centre of Excellence for ME and the ongoing research there.

Thank you all so much for supporting Invest in ME Research!

Let’s keep doing it for ME!

Donate to
Invest in ME Research

Donate/Share Let’s Do It for ME’s
fundraising for the FMT trial

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A Study Update by Katharine Seton

PhD student Katharine Seton has kindly provided an update via the Invest in ME Research Blog, on the study being undertaken at Quadram Institute, “Defining autoimmune aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. You can find it at this link where you are also welcome to comment or ask any questions: http://www.investinme.org/ce-blog-1802-01.shtml

Best wishes everyone and thank you for your support!

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