In June, Professor Simon Carding, Dr Katharine Seton, Dr Ernie Hsieh and Rik Haagmans attended the 12^th International Biomedical Research into ME Colloquium, which was held at the Wellcome Genome Campus near Cambridge.

This two day researchers’ conference is organised annually by UK charity Invest in ME Research in their International ME Conference Week and brought together researchers from 40 top institutes from across the globe.

This meeting was preceded by a planning meeting of the European ME Research Group (EMERG) and followed by the 15^th Invest in ME Research International ME Conference; a public conference that invited patients, patient groups and carers to meet and hear from the researchers.

The charity and EMERG also arranged the third European Early Career Researcher for ME Workshop – now formed into the Young EMERG network.

At the Colloquium Professor Simon Carding gave an update on the ME research within the Quadram Institute, and the other activities we’re undertaking to establish excellence in biomedical research into ME here, nationally and internationally, backed by Invest in ME Research and their generous supporters.

The recording of Prof. Carding’s talk is now available on the Invest in ME Research YouTube channel.

In it, he spoke about the aims of Quadram’s ME research, which are to uncover the mechanisms underlying the cause of ME and to develop and repurpose therapies that target these disease mechanisms, in the hope of finding a cure and treatment for ME.

ME is a very complex disease affecting multiple systems in the body, and we are working on the idea that it is caused by an infection that is driving the exhaustion or premature ageing of the immune system. We believe the gut microbes including bacteria and viruses are one source of microbial infections.

Quadram’s fundamental biomedical ME research covers autoimmunity, the ageing of the immune system, cellular metabolism and the role of viruses. This includes viruses that infect us and viruses that can shape the gut microbiome through infecting our gut bacteria resulting in their death or changes in their activity and function. These viruses can lay dormant but be reactivated under stress, and then interact with immune system. Quadram studies are taking the first comprehensive look at gut viruses in relation to ME, how they change with age, and the clusters of viruses linked to severe ME.

Dr Ernie Hsieh and Dr Fiona Newberry were both PhD students in Prof. Carding’s research group, supported by Invest in ME Research, and investigated the role of bacteria infecting viruses in ME patients. Results of these studies are expected to be published soon.

“We think these viruses that are in ME patients may be responsible or contribute to the change in bacterial populations in ME patients” said Prof. Carding.

Rik Haagmans is a current PhD student in Prof. Carding’s research group, supported by Invest in ME Research, investigating the role of gut viruses that infect human cells in ME/CFS.

Dr Katharine Seton was a PhD student in Prof. Carding’s research group, supported by Invest in ME Research to understand how the immune response responds to altered gut microbes in severe ME patients. Findings from her research are in the process of being submitted for publication.

“These studies have been five years in the making. We’ve had to develop a lot of protocols from scratch but we now think we can start to use the technology and expertise we’ve developed in Norwich” said Prof Carding.

A unique aspect of Quadram’s ME research focus is being inclusive of the most severely affected ME patients who are housebound or even bedbound.

Translating these findings relies on clinical research trials, and Prof Carding updated the audience on the RESTORE-ME trial. This aims to test whether Microbiota Replacement Therapy (MRT), also known as Faecal Microbiota Transplantation (FMT), can treat ME.

“It is going to happen! We suffered some setbacks with COVID and regulatory bodies, but this will be a randomised controlled Phase 2B trial” said Prof Carding. “We’ve received some additional funding from other ME charities to help expand the scope of the work.”

He also introduced a new trial that is being planned, Light ME Up. This study will assess photobiomodulation in ME patients and will be led by Dr Seton.

Photobiomodulation is a promising application for cell-based therapies and there has been considerable interest and anecdotal evidence for using it in ME. However, a properly conducted clinical trial is needed to evaluate it. Dr Seton has recently been canvassing feedback from people with ME to optimise the study design and ensure it’s inclusive of severe ME patients; it will run remotely so no study visits will be needed.

Prof. Carding’s talk also included the collaborative ME Research Quadram scientists have been involved in, supporting trials in Cambridge and Norway.

“This is a demonstration of how we can work together collectively across Europe to advance ME research” he said.

In the spirit of international co-operation, the EMERG also convened at the conference, holding a planning meeting with new members from Iceland, Netherlands, Austria and Germany joining. This unique European network now involves over thirty researchers from across Europe and has further increased following the meeting.

The conference week also hosted the newly formed Young EMERG, formed by Invest in ME Research and EMERG to provide a future for research into ME in Europe and encourage Early Career Researchers in Europe to develop careers in this field. Young EMERG organised and hosted an international workshop for ECRs researching, or interested in, ME and related diseases. Dr Seton, Dr Hsieh and Rik Haagmans were involved on the planning committee and Dr Seton chaired this workshop. 30 ECRs from four continents attended the workshop both in person and virtually. Following this meeting links have been made with young IMMERS (Young Investigators Motivating ME/CFS Research in the States).

“They (Young EMERG) are all incredibly enthusiastic and incredibly talented researchers” said Prof. Carding. “This is to try and encourage people to get involved in ME research to continue our legacy.”

Beyond the lab, Prof Carding updated the audience on some of the political advocacy work he has undertaken, alongside Richard Simpson from the charity. Simon and Richard are members of the Department of Health and Social Care’s ME/CFS Delivery plan working group. This new initiative will provide recommendations, for example on where any new funding can best be used to progress ME research. They are also on a US National Institutes of Health ME Research Roadmap working group with a similar remit.

“We’re trying to work across borders to get a uniform approach to this” said Prof Carding. “Making sure that ME is on the agenda when it comes to making decisions about research funding priorities.”