ME CFS PSP Terms of Reference

This document sets out the Terms of Reference for the Steering Group (SG) of the James Lind Alliance (JLA) Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Priority Setting Partnership (PSP).

The background, aims and responsibilities of the PSP are set out in its Protocol. More information about the JLA is available at http://www.jla.nihr.ac.uk/ .

Membership of the Steering Group

In line with JLA principles, this SG includes people with ME/CFS, carers and clinicians, in balanced numbers.

The group also has a single voting representative from each of the following:

• Forward ME
• Action for ME
• The Science4ME Forum
• Patient Advisory Group of the UK CFS and ME Research Collaborative

It is agreed that 3 people with ME/CFS, 2 carers and 2 clinicians will need to be present for SG meetings to be quorate. Meetings can still continue even if not quorate, but no decisions or action can be taken in the meeting. Agreement can be sought after the meeting through engaging with those not present or through discussion on Microsoft Teams.

Agreement can also be sought in advance of a meeting should a member be unable to attend.

Role of Steering Group members

Steering Group members are asked to contribute their expertise and time, and to be prepared to approach their established contacts and networks relevant to this condition.

All Steering Group members are asked to commit to working according to the JLA principles:

• Inclusivity: working with other members supportively, respectfully and constructively and aiming to ensure the full range of people with ME/CFS, carer and clinical stakeholders are involved in the PSP process
• Equality: people with ME/CFS, carers and clinicians, and the knowledge and experience they bring, are of equal value to the PSP. Their opinions are treated equally and differences in opinions are respected
• Fairness and transparency: declaring any personal interests, and ensuring decisions and activities are documented openly
• Evidence based: ensuring the work of the PSP recognises the existing knowledge based for ME/CFS and contributes to this through the PSP’s evidence checking and open publication of information from the PSP.

Members advise and agree the resources (including time and expertise) that they can contribute to ensure that each stage of the process is completed.

Activities to which members are asked to contribute:

• Publicise the PSP to potential partners, and to their own networks. This includes advising on possible contacts for the PSP and contacting any personal contacts to encourage them to participate
• Publicise and participate in any initial awareness meeting, if this takes place
• Take part in regular SG meetings/teleconferences. These will be on an approximately monthly basis, in order to keep momentum around the PSP and a check on progress.
• If unable to attend, members are asked to submit comments ahead of the meeting.
• Decisions made at meetings which are quorate are to be respected by all members.
• Oversee and lend expertise to the activities of the PSP so that these are done in an accessible, inclusive and evidence-based way. In particular
  • Agree the scope of the PSP
  • Review and test the first consultation survey
  • Promote the survey
  • Review and provide guidance to the information analysis process
  • Review the summary questions, and any out of scope or answered questions
• Agree the process forinterimprioritisation
  • Sign off the final shortlist of questions to be taken to the final priority setting workshop
  • Oversee the planning for the priority setting workshop and help recruitment to it. Typically, not all SG members take part, allowing space for new participants and perspectives.
• Commit to ensuring the PSPs final documentation is completed and shared with the JLA (documentation usually completed by the information specialist and/or PSP coordinator)
• Help publicise the final top 10 uncertainties to the research community
• Be involved in the development of research questions from the agreed priorities, and work with research funders where necessary to provide any extra information they need.

Meeting Dates

Tentative meeting dates are set out below, along with when members can expect papers to be distributed. Individual meetings may be stood down if there is a lack of business to discuss.

Specific Roles

Chair / Facilitator: The PSP will be facilitated by Toto Gronlund, a JLA Adviser. The JLA Adviser also facilitates and runs the final priority setting workshop. The JLA Adviser’s role is to support and guide the PSP, as a neutral facilitator, ensuring that the process is followed in a fair, transparent way, with equal input from people with ME/CFS, carers and clinicians.

Lead: Sonya Chowdhury is the lead for the PSP. The Lead works closely with the JLA Adviser and the PSP coordinator to champion the PSP and ensure it is successfully promoted, completed and disseminated to funders.

Coordinator: Sam Bromiley is responsible for the coordination and administration of the PSP. This includes arranging all meetings and workshops, and ensuring that:

• requests for agenda items are discussed with the group
• papers are available at least a week before meetings
• meeting notes are reviewed by the Chair, circulated within two weeks, and reviewed and agreed at the next meeting.

Information Specialist: Kristina Staley is the Information Specialist for the PSP. Her role is to advise the SG on data management and analysis strategies and agree these with the members. She will organise and analyse the data collected, review existing evidence, and help develop the long list of questions, under the guidance and assurance of the Steering Group. The outputs delivered by the Information Specialist will be approved by the Steering Group.

Code of Conduct

It is important that members of the Steering Group work to high personal and professional standards. Steering Group members are expected to:

• behave in a manner which does not bring the PSP or the JLA into disrepute or damage the relationship with Steering Group members, partners and any other stakeholders in the PSP
• maintain confidentiality when sensitive information is shared
• actively support diversity and inclusion and not discriminate against any person.

Everyone involved in the PSP should feel safe, respected and able to contribute fully.

Anyone found to be in breach of this code may be removed from the Steering Group at the discretion of the PSP leader. Any concerns related to conduct should be raised with the PSP leader and/or the JLA Adviser.

Declaring interests

Steering Group members are asked to declare any interests relevant to the ME/CFS PSP, using the JLA Interests and Needs form. The declarations will be available to all SG members. This is to encourage a culture of openness and transparency. Relevant interests may for example be professional, personal or related to an interest in or involvement in clinical research. The same form asks Steering Group members to advise whether or not they agree to being named in publicity about the PSP, and in the Protocol, which is an openly published document. If a member prefers not to be named in any publicly available material, only their role will be mentioned.

Researchers may sit on the Steering Group if the group feels this is appropriate and useful. The JLA Adviser will ensure that they do not have an undue influence on the outcome. Researchers who are currently clinically active may participate in the priority setting if they declare their interests. Anyone with conflicting commercial interests are not permitted on the Steering group.

Timescales

The ME/CFS PSP first Steering Group meeting will be on 9 October 2020. We propose that the priority setting workshop takes place approximately 18 months from the start.

Agreed by the Steering Group 08.12.20