The Quadram Institute on the Norwich Research Park is holding a public meeting to talk about their ongoing research into myalgic encephalomyelitis (ME or ME/CFS).
The event will also be a chance to give your opinions about the planned future clinical trial into a new form of treatment that targets gut microbes for ME.
The charity Invest in ME Research has pledged over £500,000 to fund a clinical trial for testing the use of Intestinal Microbiota Transfer (IMT), also known as Faecal Microbiota Transplantation (FMT) to treat ME, and the research team want to gather your opinions to inform the design of the trial and interest in participating.
There are around 250,000 people in the UK with ME. It causes widespread pain, extreme fatigue, an inability to concentrate and for a large proportion of people, gut disorders such as Irritable Bowel Syndrome (IBS).
Although there are various therapies that aim to relieve the symptoms, there is no cure and the causes of ME remain unknown. With substantial support from Invest in ME Research, the Quadram Institute has established a research programme looking to understand the links between ME and the population of microbes that colonise or gut. Known as the microbiota, there’s a growing body of evidence that these trillions of bacteria, viruses, fungi and other microbes play a major role in keeping us healthy.
The planned trial will transplant the microbiota from healthy donors into participants with ME who volunteer to take part.
The source of the donor material is faeces, which is screened and processed before it’s delivered into the recipient’s gut through a tube. It may sound repulsive, but these Faecal Microbiota Transplants are now being used by the Norfolk and Norwich University Hospital and other hospitals throughout the UK to treat recurrent infections of Clostridiodes difficile (C. diff) bacteria and there is a lot of interest in assessing their use for other conditions. One of the aims of the public meeting is to understand attitudes towards FMT and its use in the future trial for ME, before the study is submitted for ethical approval.
Professor Simon Carding from the Quadram Institute and the University of East Anglia (UEA) is leading the study, which also involves colleagues from UEA, the Norfolk and Norwich University Hospital (NNUH) and East Coast Community Healthcare (ECCH). Members of the team will be talking about their roles in the new trial.
Professor Carding will summarise the ongoing ME research and introduce the FMT trial, Dr Ngozi Elumogo, Consultant Clinical Microbiologist, NNUH will speak on safety of FMT and UEA’s Dr Andrew Atkin will explain how monitoring activity objectively will be one of the outcomes that will be assessed. Participants will be recruited through the specialist East Coast Community Healthcare ME/CFS service which serves patients living in Norfolk and Suffolk, and Jo Wiggins from ECCH will talk about recruitment.
The event is being organised with Invest in ME Research and takes place on Friday 7th February, 12:30 – 15:00 in the Quadram Institute. Lunch will be provided. Attendance is free but places are limited and must be booked in advance.