It is proposed that there be commenced a Victorian Pilot Project aimed at establishing a CFS/ME reference resource the principal purposes of which is to facilitate research into CFS/ME with an emphasis on causation, treatment, relief and cure.

Eventually there will be established a National CFS/ME Patient Register, being a national register of all persons who suffer from chronic fatigue syndrome and related illnesses who consent to data regarding their illness being recorded and thereafter being monitored. This Victorian Pilot Project involves exploring the parameters and usefulness of such a national register by establishing a Pilot Register in Victoria. The Victorian CFS/ME Register would be aimed at assessing the extent of the CFS/ME health problem in the Victorian community and determining the extent to which research into CFS/ME can be facilitated from the data contained in and extrapolated from the Register.

THE REGISTER AS A RESEARCH RESOURCE

The CFS/ME Patient Register would become a resource facility to service the information needs of different types of users be they medical practitioners, therapists and other professionals, CFS/ME support societies and Government Health Departments.

To facilitate wide accessibility, the CFS/ME Patient Register would include the establishment of a CFS/ME Register web site as a resource for those interested in accessing summary data extracted from the Register proper. Through a process of accreditation, those who are formal researchers into CFS/ME would be permitted access to the detailed material contained on the Register. Those not accredited would nevertheless gain access to the information in a reduced and more general format.

This CFS/ME Patient Register would be a data bank designed to include as much information as possible on each registered CFS/ME sufferer so that research and computer analysis of the data can be regularly carried out to determine common causes or triggers, monitor common trends and hopefully identify successful treatments.

It is proposed that those compiling the CFS/ME Patient Register be liberal, or open minded, with their definition of CFS/ME. Entry into the Register should not be an exclusionary process - flexibility ought to allow registration of all those who are actually diagnosed with CFS/ME together with those who claim they have CFS/ME but who await diagnosis or confirmation. It is for the subsequent research process to interpret the data - those who wish to use the CFS/ME Patient Register for research would have the freedom to approach their research task in a restrictive manner when analysing the data on the Register; those who wish to take a more lateral approach would not be excluded.

REGISTER PROTOCOL

The CFS/ME Patient Register will be compiled following a strict protocol which will ensure individual CFS/ME patient confidentiality. Entry of patient material onto the Register will occur only upon receipt of a voluntary written consent from each individual allowing such material to be so recorded.

Methods of masking the private contact and identification details of each patient will be determined so that only limited direct access back to the patient is possible. Clearly monitoring of the progress of the CFS/ME patients will require ongoing contact which will need to be masked by an individual coding system. Security can be assured.

Sources of patient profile data will most probably be obtained from three sources : (1) via CFS/ME societies from members and their carers; (2) from doctors treating CFS/ME patients; and (3) from responses to invitations to CFS/ME patients to register via advertisements appearing in the Victorian press. In all instances, the written consent of each CFS/ME patient to the registration of data on them will be a prerequisite for the information to be entered (and thereafter monitored).

THE REGISTER AS AN INFORMATION BASE TO UNDERPIN THE WORK OF THE CFS/ME SOCIETIES

The CFS/ME Patient Register would provide the CFS/ME Societies across Australia with critical (and hitherto unavailable) data to facilitate their awareness campaigns and underpin their advocacy for greater resources for (a) themselves as the providers of support, respite and information and (b) for CFS/ME medical research (the Register being likely to confirm the serious extent of the illness within the population).

OPEN MINDED APPROACH ESSENTIAL

It is considered essential that biases, or pre-conceived notions of CFS/ME narrowly defined, do not prejudice the preparation of the CFS Patient Register. It is for subsequent users of the data base, researchers, to exercise their judgment to cull the material they wish to rely upon or refer to in their work. Accordingly, it is essential that the data base be all inclusive and so be receptive to mainstream medical research as well as alternative medicine and natural therapies. No approach or research work, whatever its basis, ought be excluded.

CFS/ME PATIENT REGISTER PROJECT TEAM

In order to facilitate the most open-minded approach to the preparation of the CFS/ME Patient Register, it is proposed that a specially appointed multi-disciplinary investigative team (not limited to medical practitioners) who are unconnected with any existing research institution, hospital or university be formed to compile the Register. Members of this team would be employed for the task. Once the Register is established it is envisaged that maintenance and updating of the Register will only require lesser part-time input from employed personnel.

The first year during which the CFS/ME Patient Register is established will be the most onerous and so it will be necessary to employ a small investigative research team. The envisaged structure of the Project is that an overseeing Project Panel will comprise the most senior personnel with expertise across relevant disciplines who will contribute their skills and expertise voluntarily. Consequently, it is envisaged that the investigative team will comprise far more junior personnel. Two employed persons, not necessarily full time, should be sufficient. They would be chosen for their training, skills and enthusiasm for the Project accordingly they could be young researchers, not necessarily restricted to a medical background, who might be very recent university graduates.

CFS/ME PATIENT REGISTER PROJECT PANEL

It is proposed that the investigative team be overseen by a Panel of senior community, CFS/ME Society and medical research representatives who will act as advisers. It is expected that a representative of the Department of Health would be a member of this Panel. The Panel will be independent from the operations of the CFS/ME Society as it will be required to be solely focussed on the Register Project. This panel will be known as the CFS/ME Patient Register Project Panel.

All members of the Project Panel would give their time voluntarily as a community service.

THE RECIPIENT OF THE GRANT

To be successful, it is critically important that CFS/ME sufferers and their carers have confidence in the Register Project - the Project will only succeed with the full support of those in the Victorian community who are associated with CFS/ME. The Project must not be seen to have the prospect of being overly influenced by any particular institution - hence it is not proposed that the Project be associated with any particular hospital or university. Accordingly, it is proposed that in order to engender the requisite support for the CFS/ME Patient Register it is essential that the Victorian Pilot Project, at least in the first instance, be established under the auspices of the CFS/ME Society of Victoria Incorporated. The Government grant would be made to this Society.

The management of the Pilot Register Project would by overseen by the Panel of independent senior representatives, the CFS/ME Patient Register Project Panel. The ME / CFS/ME Society of Victoria has welcomed the offer by Mr Simon R. Molesworth AM, QC to chair the CFS/ME Patient Register Project Panel.

PROJECT COST

Although final costings have not been determined, it is estimated that the Register Project would cost not less than $100,000 with a maximum of not more than $150,000.

The Project cost would have to cover the salaries of two, probably part-time, junior researchers; computer equipment; stationery; and the costs of communication, ie., post, telephone, facsimile and email.

The Project investigation team could be accommodated in the offices of the CFS/ME Society however with the portability of computer technology it is envisaged that the Register team will be regularly "out and about".

The CFS/ME Society is a registered charity eligible to receive tax deductible donations. It is proposed by the Society that it will embark upon a special project appeal to raise donations from members of the community willing to support the Project. Potential financial support has already been identified. These donated funds would supplement a grant from the State Government.