Historically, research has often overlooked the shared priorities of patients, carers and clinicians.  The pharmaceutical and medical technology industries and academia play essential roles in developing and testing new treatments, but their priorities are not necessarily the same as those of patients, carers and clinicians.  

The PSP approach aims to address this. We will prioritise the research questions that are most important to patients, carers and clinicians. Then we will work with research funders to kickstart research into these areas.

Our PSP is led by a steering group made up of people with ME/CFS, their carers and clinicians. We are facilitated by non-profit making initiative, the James Lind Alliance, working in partnership with UK charity Action for M.E.

Many of our steering group members are involved in other ME/CFS organisations, such as the Science for ME forum, the CMRC patient advisory group, Forward-ME and more. But this project is a new initiative and independent of them.

Find out all about our steering group here.

The role of the PSP is to identify questions that have not been answered by research to date, and then to prioritise these. The methodology used is facilitated by the James LindAlliance using a tried and tested process.

The first stage is to ask patients, carers and clinicians, via an online survey (with paper copies available for those who need them), for unanswered questions about ME/CFS.

These questions are then assessed to check they are in scope for the PSP and are checked and verified as true uncertainties.

An interim prioritisation exercise then takes place, again via an online survey (with paper copies available for those who need them), before a priority-setting workshop is convened where participants debate and finally arrive at a Top 10 list of research priorities.

The eventual aim is to turn these priorities into research questions, and for members of the Steering Group to work with researchers and research funders to obtain funding for that research.

The ME/CFS PSP is funded by the National Institute for Health Research, the Scottish Government Chief Scientist Office and the Medical Research Council.

This funding has been made to UK charity Action for M.E. who will provide administrative, communications and coordination support for the project, facilitated by non-profit making initiative, the James Lind Alliance.

This is a new initiative and not linked to any previous research or agenda. Everyone is welcome to take part.

Last September, the JLA published More than a Top 10, reporting on the transformational potential of PSPs. Outcomes can include:

• enabling patients to expand and enhance involvement in other parts of the research system
• changing clinical practice
• supporting organisations to develop new partnerships
• promoting greater collaboration and enhancing patient and public involvement
• changing relationships between funders and researchers, placing less emphasis on competition and greater emphasis on working together to achieve a common goal.

Recent successful PSPs include those for mitochondrial disease, safe care for adults with complex health needs, and multiple sclerosis.

The PSP for asthma culminated in a study funded by the NIHR Health Technology Assessment Programme against a PSP priority.

“Without this coming together of patients with the research community, catalysed by the JLA, the subject of breathing exercises would never have been identified as one that received so much enthusiastic support.”

Prof Stephen Holgate, former Chair of the UK Respiratory Research Collaborative and now Chair of the UK CFS/ME Research Collaborative.

Throughout the process the steering group was aware that fluctuations of ME/CFS impact on people’s ability to participate. Our steering group used their extensive knowledge and personal experience of ME/CFS to adapt the process so that those with more severe ME/CFS were included.

Ensuring survey accessibility included:
•    online and paper versions
•    online version automatically saving so respondents could take a break
•    the 25% ME Group provided specialist phone support to those with severe and very severe ME/CFS
•    grouping the long-list of 59 questions into categories to break the questions into more manageable chunks
•    producing printouts and a searchable webpage for the long-list of questions.

The final workshops were held online, and formatted to accommodate the needs of people with ME/CFS. We also made sure to include proxies for those with very severe ME/CFS who were unable to attend themselves.

The PSP lead is the CEO of Action for M.E., the accountable organisation for delivering the PSP. Responsibilities include managing the budget and ensuring that the PSP complies with all necessary safeguarding, data protection laws and other legal requirements throughout the existence of the PSP. However, decisions made about the PSP are made by the Steering Group and not the PSP Lead or Action for M.E.

The Coordinator is responsible for the day-to-day running of the PSP.  They will work closely with the Steering Group and will be the main point of contact. Alongside administration and organisation, the Coordinator will look after the website and social media to help promote the PSP and its work.

Process Specialist – Toto Gronlund

The Process Specialist role is to support and guide the PSP, as a neutral facilitator for the Steering Group. They ensure that the process is followed in a fair, transparent way, with equal input from people with M.E./CFS, carers and clinicians. They do not have a vote during the process nor on the resulting research priorities.

Information Specialist – Katrina Staley

The Information Specialist’s role includes reviewing and sorting survey responses and reviewing existing research evidence. They turn the raw survey responses into researchable questions and then check that those questions have not yet been answered by previous research. This ensures that the work of the PSP is credible and up to date. Subject to the approval of the Steering group the Information Specialist is responsible for preparing and presenting research questions at the end of the PSP process.