MEGA is committed to meaningful engagement and communication with members of the ME/CFS community. As part of this, we are openly recruiting 12 to 15 adults to a Patient Advisory Group. The closing date for applications has been extended to 9am 13 December 2016. Please read on to find out more and how to apply.
Terms of reference
The following draft terms of reference will be agreed by the appointed Advisory Group members and the remainder of the MEGA team.
Aim of the group
To provide people with ME/CFS, their carers, and people with an interest in ME/CFS, with a full voice in advising and collaborating with the MEGA team to inform all stages of the MEGA study to better understand the biology of ME/CFS. Advisory Group members are asked to contribute to the MEGA study by:
- actively engaging in the design of the MEGA study and to be participants in its conduct
- identifying any potential practical issues for participants, questions, gaps or concerns about the study and to comment on study documents and procedures
- contributing to, and informing, the planning process for securing funding, recruiting participants and disseminating results.
Application for membership is open to all people with ME/CFS and their primary carers and people with an interest in supporting ME/CFS research. Advisory Group membership is a voluntary role and no reimbursement will be made for time and participation unless physical attendance at meetings is required. The Advisory Group membership will not be higher than 15 members. Advisory Group members should meet the following criteria/person specification:
- have the ability to understand the concerns of people with ME/CFS, their families and carers
- demonstrate a constructive, balanced, and broad view of understanding relating to ME/CFS and the experiences of people with it
- have a keen interest in research, health and/or consumer-related issues
- be willing and able to commit the time required to take part in Advisory Group activities and prepare appropriately, including the careful reading of relevant material (which will be provided in advance)
- be able to participate in meetings (which will probably happen virtually), contribute to email discussion and/or teleconference calls. We recognise the impact of the illness may affect ability to participate at times. However, we ask that at the time of application, you anticipate that you will be able to engage as fully as possible. We anticipate that routine meetings will be organised twice a year but it is likely that from time to time, additional meetings will take place or we will ask your views via email or phone call.
- consider the research requirements and implications for all study particpants without having a pre-set agenda
- have a keen interest in critical evaluation and be able to look at a situation as objectively as possible and from many viewpoints, not purely from one’s own
- be willing to challenge and be challenged and to take an active part in meetings whilst also allowing others to play a part
- be able to listen to, read, assimilate information and analyse evidence that is sometimes complex
- demonstrate tact and discretion and uphold confidentiality
- hold experience from one or more of the following (preferred but not essential):
- health care
- science communication
- charitable funding
- work in voluntary committees.
We recognise that people with severe ME/CFS are unlikely to be able to participate, and are particularly interested in hearing from people who have had direct experience of severe ME/CFS previously or as a primary carer.
What you can expect from us
People volunteer for all kinds of reasons and we want to ensure that you get something back too. We will work with you to ensure that we get the balance right. We will:
- use technology to make it as easy as possible to participate, given the limitations of the illness
- ensure you are clear about your role and responsibilities
- always treat you with respect and compassion
- provide you with support that fits with your role and your needs as well as ours
- always value the role you play in our team and the contribution you make to our work
- listen to, and act on, feedback that you give to us outlining what we did/didn’t do and why
- ensure you have the information you need to participate in the wider MEGA team effectively.
How to apply
Please complete the application form and return it to Action for M.E., who are administering the recruitment while the MEGA team sets up its communications channels. If you have trouble downloading the form for any reason, please contact Action for M.E., who would be happy to send you a copy of it by email.
The closing date for applications is 9am 13 December 2016. Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK (TBC) and a representative from the MEGA team, Prof Paul Little.
Please ensure that you state fully how you meet the criteria/person specification in your application. Successful applicants will be selected by scoring by the panel against this specification.