Governance & Meetings

(Click the dates to read the minutes of our meetings)

Members Meeting Minutes

Steering Group Minutes



The ME community in the UK is served by a considerable range of charities, with even the largest being relatively small. Recognising the benefit of being able to speak with a louder voice, Forward-ME was established as a coordinating body to provide a unified and perhaps louder voice for the ME community to reach key influencers and stakeholders – government, medical bodies etc.

Forward-ME’s overall objective is to ensure the needs of people with ME/CFS are better met by promoting and facilitating unity across the ME/CFS field and forging greater collaboration with stakeholders. Forward-ME has been successful in this in several areas, most recently as the coordinated response to the recent NICE guidelines, without ‘cutting across’ the activities and governance of any individual charity.

Thanks are due to Countess of Mar for instigating and leading Forward-ME to date in such an effective fashion. The time has now come for a new Chair to take over. The purpose of this document is to ensure clarity for all interested parties on the role and responsibilities of the Chair.

Forward-ME is a voluntary organisation that provides unity to several relevant charities, organisations and individuals to advance the cause and improve the lives of people suffering with ME. This alliance facilitates progress by sharing, promoting and communicating the following:

  1. Research & Application – the studies and science that may advance understanding of the cause, treatment and quality of life of people suffering from ME.
  2. Support & Care – the best management for patients, families and carers to reduce suffering, enhance chances of recovery and cope with the challenges of ME.
  • Advocacy & Education – creating a clear and contemporary understanding of ME amongst the medical profession, media and government with a view to speedy and accurate diagnosis, prevention and, in time, a cure.

Terms of Reference
Members of Forward-ME and Forward-ME itself will act with transparency and integrity and ensure shared values are upheld in all aspects of Forward-ME’s work.

Mindful of the different legal purposes of each member of Forward-ME, Members will work collaboratively to:

  • increase credibility and visibility of the impact of ME on children, adults, families, professionals and others
  • influence change with key stakeholders including government and government departments, health and social care, welfare benefits, education and research to redress the impact of ME
  • increase awareness and understanding of ME with the wider public
  • amplify the role and work of the charities/Forward-ME membership and work to obtain increased access to key external stakeholders (e.g. government, medical bodies, media) to increase the volume of our voice
  • facilitate the coordination and effectiveness of the alliance between the membership partnership including chairing of meetings and follow-up progress on decisions and recommendations identified
  • field appropriate experts to speak on behalf of Forward-ME and, at times, act as a spokesperson having agreed a common position with the Members.
  • Notwithstanding the common purpose of Forward-ME, Members may comment and issue statements in their own right

The Role of the Chair
The role of Chair will be independent from any of the members/charities. When a vacancy is imminent, a suitable candidate may be proposed to the Steering Group by any Member of Forward-ME. In the case of more than one proposal, the Steering Group will select the most suitable candidate for approval by the whole membership. The Chair is appointed for a renewable period of three years and is accountable to the membership. The Chair assumes a facilitative role within the collaboration of Forward-ME and will work with the membership of Forward-ME to identify common goals and shared purpose.

The Chair will provide effective and appropriate challenge and act as a constructive, critical friend as well as promoting reflection to drive continuous improvement across the Forward-ME partnership. The Chair will oversee the appointment of a Steering Group and a Deputy Chair subject to a majority view of Forward-ME’s members.

Subject to prior discussion with and the agreement of the Steering Group, the Chair can explore possibilities and to negotiate with other individuals and/or organisations on behalf of Forward-ME, without prior agreement of Members, in order to promote the interests of people with ME. These activities will be reported to Members at scheduled meetings.

Membership of Forward-ME will be by invitation from the Chair

In the event of a Member divulging information which is confidential for the benefit of Members the Chair will ensure that it is not published in the minutes of Forward-ME. Should a Member of Forward-ME independently publish the information gained at a meeting of Forward-ME or the Steering Group their membership may be summarily withdrawn by the Chair if the divulgence is serious.

In each case where there may be differences of opinion between Members, every effort should be made to reach consensus through discussion and compromise.

The Role of the Steering Group
The Steering Group will meet bi-monthly and will oversee activity to achieve Forward-ME’s goals.

The Steering Group will reach decisions by consensus, failing which decisions will be made by majority vote on the basis of one member, one vote, with the Chair having the casting vote.

Membership of the Steering Group will be limited to six members of Forward-ME. If a member is an organisation, e.g. , a charity, then the individual present at the Steering Group represents that organisation and, by prior agreement with the Chair, can nominate a deputy to attend if they are unable to do so. If necessary other individuals may be co-opted for temporary periods. Should members of the Steering Group be unable to attend meetings consistently and/or be available for their ongoing feedback and views, the Chair may dismiss them from the Steering Group after consulting existing Steering Group members. Members are selected by the Chair for their individual expertise and experience and will speak and advise on behalf of the whole ME community.

Members of the Steering Group will agree to act with openness and integrity, to abide by the agreements reached within the Group and will perform the minuted actions assigned to them.

In the event of one member failing to fulfil commitments to the Steering Group or to Forward-ME the Chair may withdraw membership with the agreement of the remaining members.

No decision of Forward-ME can override the independent decision-making power of Members in respect of their individual charities.