PRIME (Partnership for Research in ME) Project

Funded by the GUS Charitable Trust

Facilitated by Crowe Associates, Minervation and the RCN Institute

Introduction

Following the creation of a Chief Medical Officer’s working group, two subsequent strategic reviews of services/research into CFS/ME, and the decision to fund clinical network co-ordinating centres and local multidisciplinary teams, there are emerging opportunities for collaboration amongst people living with or who have recovered from CFS/ME (and those who care for them), researchers and the service delivery network.

One of the main opportunities is harnessing and translating the experience and stories of the CFS/ME community into an accessible patient evidence base that can inform future research and services.  The database could contribute to studies that examine the important issues that affect people with CFS/ME, from cause to care, and address the issues that face the NHS in this field of long-term illness.

This project will help to build some consensus across the different groups on issues such as priorities for research; provide a rich source of research data for those trying to develop a better understanding of this condition, and promote shared understandings and partnerships between patient groups and researchers and clinicians.

What will involvement in the project bring to the stakeholders?

• For patients and their carers, the PRIME project will increase their influence on the research agenda and contribute to robust qualitative research
• For researchers it will provide better access to a wide range of people with CFS/ME and a shared understanding of their research priorities, and virtual access to a ‘pool’ of narratives
• For service providers (including the specialist centres) further insight into the experiences and priorities of their actual and potential service users.

What will the project achieve?

There are four distinct parts to the project:

1. A qualitative research programme including a survey of the literature on patient experience in ME/CFS; a series of face to face interviews with people living with, or who have recovered from CFS/ME.  The sample will include the severely affected and young people. 
2. The development of an accessible patient experience database and virtual network  (called an ‘e community’) that complements existing CFS/ME websites/networks, but has an emphasis on CFS/ME related research, and other networking functions www.prime-cfs.org
3. Partnership working, supported by interactive research workshops that will address the challenges in CFS/ME research; different methodologies and focus on developing research questions.  The techniques used in the workshops will be developed into a ‘tool kit’ for further use with multidisciplinary groups, the tool kit will be available on the PRIME website
4. A review of Quality of Life Measures used in CFS/ME, with suggestions for measures (developed with people with CFS/ME) for future research

 All these activities will overlap and inform each other, helping to build a more comprehensive picture of CFS/ME

Who will be facilitating the project?

 There are three organisations helping to make this project happen:

• Crowe Associates www.crowe-associates.co.uk/ who will overall project manage and organise the research workshops
• Minervation www.minervation.com who will help develop the e community and facilitate the site user group
• Royal College of Nursing Institute www.rcn.org.uk who oversee the qualitative research programme and analyse the results.

All three organisations have involved the public and patient groups in their work and have a long track record of successful partnership working.

How can the research community get involved?

 Opportunities include:

• participating in the project management (steering) group;
• participating in workshops;
• participating in, and helping to shape the research “e-community”
• Others that researchers/clinicians identify

For more information and to express an interest in any aspect of the project please contact Sally Crowe on:

Email: sally@crowe-associates.co.uk

Tel/Fax:  01844 216929

 www.prime-cfs.org