November 22, 2016
In response to questions asked by our supporters and others affected by M.E., we would like to clarify our position on the M.E./CFS Epidemiology and Genomics Alliance (MEGA) research project, and set out our reasons for supporting it.
MEGA is the culmination of the Grand Challenge, launched at the 2015 UK CFS/M.E. Collaborative (CMRC) conference. We are one of four charities who sit on the Board of the CMRC. The other three are the M.E. Association, M.E. Research UK and the Association of Young People with M.E.
It was agreed that Action for M.E. would represent all four charities on the MEGA team. We are not there as scientists, but instead to advise on patient engagement and to support the patient advisory group (see below).
The MEGA team is trying to understand more about the biology of the M.E. to improve the lives of people living with the condition.
Action for M.E. is working with the MEGA team because we believe there is a desperate need to better understand the biology of this illness, currently called M.E. and/or CFS in the UK, and the subsets that exist within it. If funding is successfully applied for, this big data study will be first of its kind in this illness field and will use samples and data from 12,000 people who have been diagnosed with M.E. and/or CFS.
Large biomedical studies like this one are essential if we ever hope to make a significant and lasting improvement to the lives of people with M.E.
Action for M.E. believes that researchers and people with M.E. should work together to design, implement and disseminate research. Our role is to play an active part in the MEGA team and to support, along with the other three charities, the open recruitment and development of an advisory group of 12-15 people affected by M.E., including carers. This advisory group will play a proactive role in the process of making decisions about key elements of the study, such as who is or isn’t eligible for participation in the study.
Action for M.E.’s research focus is on biomedical research, investing in research infrastructure which includes bringing researchers into the field and increasing collaboration. This is approximately 20% of the charity’s work as a whole. The focus of the MEGA study is not psychological and does not test any form of treatment, behavioural or otherwise.
We know some people have concerns about the MEGA study. We would like to reiterate that no decisions have been made about the design of the study because the team has yet to recruit the advisory group that will play a role in making these decisions. In this field, the most severely affected are the most severely neglected and we have a responsibility to ensure that this study design includes people with mild, moderate and severe M.E.
The scientists and researchers involved in MEGA cover the spectrum of disciplines in the -omics field. Some of the scientists on the MEGA team are members of the CMRC, but the majority are not and come from different medical research fields. No-one now involved in MEGA has worked on the PACE trial. A number of researchers on the team represent clinical and research work with adults with M.E. (Action for M.E.’s medical advisor, Prof Julia Newton and a primary care researcher, Prof Paul Little) and children with M.E. (the Association of Young People with M.E.’s medical advisor, Prof Esther Crawley).
Unrelated to MEGA, both receive funding from Action for M.E. for individual research projects. Prof Newton receives £30,000 funding from donations made to the charity plus a £5,000 contribution from a non-M.E. research charity for an autonomic dysfunction study. Prof Crawley receives a £6,000 match-funding grant, fully funded by a venture capital company (who wish to remain anonymous), for a surveillance study to identify how many children and young people have severe M.E.
Researchers, plus advisory group members and Action for M.E. (representing the four charities as outlined above) make up the MEGA team, and decisions will be made using a mutually agreed process. You can find out more about the MEGA vision and engage with team on the new MEGA website which will be launched very soon. We will link to the site as soon as it becomes live.