The ME/CFS Epidemiology and Genomics Alliance (MEGA) has constructed a new website, which went live today. It contains information on the background and aims of the MEGA project, and has a Question and  Answer section (which is also pasted below).

Importantly, the website also contains draft terms of reference for the Patient Advisory Group, and invites applications from people wishing to join the group; these can be people with ME/CFS, their carers, or other people with a general interest in the field (read more). The deadline for applications has been extended and is now 9 a.m. on 13th December 2016. The reason for the short timescale is that the mainstream funder to whom the MEGA team wish to apply for funding has an application deadline of early January 2017, and the Patient Advisory Group will play a part in shaping the study (read more).

MEGA was established following a Grand Challenge workshop convened by the UK ME/CFS Research Collaborative (CMRC) in May 2016 (read the report), and was launched at the recent CMRC conference in Newcastle. Its aim is to investigate, using DNA, RNA and other molecules, the distinctive genetics, epigenetics, proteomics and metabolomics of people with ME/CFS, using a very large number of samples. Investigations like this are the latest trend in population-based scientific research, and are a way to generate large volumes of useful data which can be mined for information (see Why We Need MEGA).

patient-reported

At the moment, MEGA consists of 15 UK-based scientists from a range of disciplines, such as epidemiology, metabolomics, immuno-pharmacology, health informatics and epigenetics (see team members), with an expectation that more will come on board. The new website will host blogs from each of these experts explaining their interest and involvement in the study – Prof Chris Ponting and Prof Hugh Perry have already contributed their some of their thoughts. As a ‘big data’ research study, it aims to recruit at least 10,000 adults and 2000 young people, whether ME/CFS patients or healthy volunteers – over 2500 people added their names in support on the original MEGA support page.

As one of the four charities represented on the Executive Board of the CMRC (read more), ME Research UK believes that the MEGA project has considerable potential. We like the idea of the ‘big team’ approach, a collaborative effort between established scientists with a proven record in their own fields of research. At this initial stage, we feel that the aims of the project are worth supporting whilst the level of patient support is being gauged and a protocol developed. It must be stressed, however, that the project is still at the planning stage, and the development of the protocol will depend on the expertise and resources available, cost constraints, and inputs from the Patient Advisory Groups.

There are many issues to consider going forward, most importantly patient selection, and the MEGA team are working together to identify the best approaches. Because a ‘big data’ project needs to recruit a wide spectrum of patients, it’s vital to have robust clinical information on each person to allow subgrouping on the basis of specific diagnostic criteria, disease severity (from mild to severe) and other factors important for the interpretation of ME/CFS data, such as mode of onset (infectious, insidious etc.,) and duration of illness. The recruitment of very severely affected patients will be a particular challenge as they are rarely seen at NHS clinics, but it should not be overlooked, and one option is to obtain appropriate already-collected and well-characterised samples from the UK ME/CFS Biobank. Prof Stephen Holgate contributed some thoughts on these issues recently; as he says, “to find causative pathways and uncover molecular mechanisms we need a broad range of disease severity and clinical manifestation…The key as far as I see it is to ensure that each patient is deeply phenotyped and with the same standard operating procedures (read more)”.

Prof Stephen Holgate and Prof Jose Montoya at the 2015 conference

Prof Stephen Holgate and Prof Jose Montoya at the 2015 CMRC conference in Newcastle

Further reading
Big data, better health. New Scientist, 2015 (read more)
Why broad definition should be used as a starting point, by Prof Stephen Holgate (read more)
Give this MEGA project a chance to fly, by Dr Charles Shepherd (read more)
Report of a Grand Challenge workshop. UK CMRC, May 2016; pdf (read more)
Can Big Data Tell Us What Clinical Trials Don’t? New York Times, 2014 (read more)

The MEGA website provides an extensive Question and Answer page, which addresses specific questions they have received, and is being updated as the project develops.