Modus Operandi for the CureME Steering Group

HISTORY

CureME is a team of researchers at the London School of Hygiene & Tropical Medicine (LSHTM). It conducts research into the aetiology, epidemiology and clinical presentation of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). Operating within the legal personality of LSHTM, its research work is funded by a number of research grants, most significantly, in 2013-2021, by two awards from the US National Institutes of Health.

One of its major projects has been the creation of the UK ME/CFS Biobank (“the Biobank”). It was established in 2011 with initial funding provided by three ME/CFS charities – Action for M.E., The ME Association and ME Research UK – and a private donor. The Biobank is located within the University College London/Royal Free Hospital Biobank.

The CureME Steering Group (“the Steering Group”) was created to provide a forum to enable people with ME/CFS and their carers, ME/CFS charities and researchers with an interest in ME/CFS to be informed and consulted on the operation and development of the team.

STEERING GROUP

Membership of the Steering Group comprises people with ME/CFS and their carers, representatives from ME/CFS charities, staff at the LSHTM and researchers with an interest in ME/CFS. There is no term limit for membership, other than for Officers (see below).

The Steering Group was created to be consulted on and provide input into, all aspects of the work of the CureME team.

The Steering Group also appoints a Guardian Board (as a subcommittee of the Steering Group), which has responsibility for reviewing initial applications to make use of Biobank research samples or data, prior to sending a formal application for peer review.

This provides an important level of assurance to the LSHTM, when signing an MTA with external researchers, that the views of the wider ME/CFS community have been appropriately considered. The subcommittee consists of one patient representative, one charity representative and one representative from the CureME research team at LSHTM, with no term limit for membership.

AIMS AND OBJECTIVES

• To be consulted and informed on the progress and development of the CureME research team, including particularly the UK ME/CFS Biobank;
• To be consulted on the progress of CureME’s research portfolio, providing assurance to external research funders that the views of the wider ME/CFS community have been appropriately considered in the team’s decision-making;
• To ensure that the team always considers the needs and opinions of people who are donating blood samples to, and researchers using, the Biobank;
• To advise on the development of application procedures, peer review processes, ethical considerations, costings, and protocols for collection and release of blood samples and data;
• To promote and raise awareness of the Biobank;
• To advise on income generation where appropriate.

MEMBERSHIP

This is decided by members of the Steering Group and currently consists of:

• Members of the CureME team at the LSHTM;
• At least two and up to four representatives from ME/CFS charities. This group currently consists of representatives from the ME Association, ME Research UK and The ME Trust;
• At least two and up to four patient representatives who are a patient, a carer and/or partner of a person with ME/CFS;
• At least two and up to four clinicians or researchers with a special interest in ME/CFS;

The Steering Group is an advisory body only, and no voting procedure is required.

The Steering Group has no legal authority, so no conflict of interest is envisioned with (for example) a charity trusteeship, but where this may or may perceived to be an issue, any member can recuse themselves from a discussion by notifying the Chair.

OFFICERS

The Steering Group will appoint a Chair and a Secretary. The Chair will be appointed for a period of two years, and may be re-appointed twice to a total term limit of six years. Members of the CureME team are not eligible to chair the Steering Group.

The Steering Group will appoint the Secretary. LSHTM staff are eligible to be appointed as Secretary.

MEETINGS

Steering Group meetings normally take place in person or by conference call quarterly in March, June, September and December.

The LSHTM team will undertake meeting dates and bookings. The agenda for the meeting will be drafted and circulated by the Secretary, after approval from the Chairman. Any member of the Steering Group can ask for an agenda item to be added to the agenda.

The meetings are held in private.

Minutes will be drafted by the Secretary and approved by the Chair for circulation, a maximum of one month after the date of the meeting.

Observers can be invited to meetings with prior consent of the Chair of the Steering Group. Individuals may also be invited to give presentations, as appropriate.

EXPENSES

The cost of hiring meeting room facilities and any refreshments is met by the CureME team.

Members are responsible for covering any of their travel expenses where possible, except for patient, carer or partner representatives, whose travel expenses will be reimbursed within reasonable limits by the CureME team (such expenses to be agreed with the CureME research team in advance of travel). No other expenses can be claimed, nor are any fees payable to members of the Steering Group.