Patient Advisory Group – patient perspectives informing research
The DISCOVER-ME Patient Advisory Group (PAG) brings together representatives from European ME organisations through the European ME Alliance (EMEA), allowing the knowledge and experiences of patients and carers, together with patient organisation perspectives, to the project, thus contributing to research, communication and other project activities.
The PAG has a core working group of members, with a reserve pairing structure to maintain continuity.
Membership aims to represent those affected by ME and to provide geographic diversity across the countries involved in the project. Language access provisions are in place for members who need them.
EMEA leads the PAG on behalf of the consortium.
Role of the PAG
The PAG helps to ensure that the needs, experiences and priorities of people affected by ME are considered throughout DISCOVER-ME. Members contribute to relevant project activities, including reviewing plans and materials, advising on relevance and accessibility, and contributing to research, communication and dissemination activities.
The PAG also provides a route through which perspectives from the wider European ME community can inform the project.
Working within DISCOVER-ME
Patient and public involvement is integrated across DISCOVER-ME. The PAG works with researchers and other consortium partners where patient input is relevant, with EMEA coordinating involvement and bringing PAG input into relevant work packages and project activities.
European representation
The PAG draws its membership from EMEA member organisations across Europe, providing perspectives from people affected by ME in different countries and communities.
Individual PAG members are not identified publicly. The PAG represents the collective contribution of EMEA and its member organisations to DISCOVER-ME.
EMEA Patient Advisory Group (PAG)
Discovery starts with listening
European ME Alliance (EMEA)
The European ME Alliance (EMEA) is a grouping of European organisations dedicated to supporting patients suffering from Myalgic Encephalomyelitis.
Founded in 2008 by national patient organisations and charities across Europe, the alliance is committed to improving the lives of those affected by ME.
