Questions to the RSM
Yesterday, I contacted Ms Nicole Leida, Events Co-ordinator, RSM with some queries about the Chronic Fatigue Syndrome Conference.
I asked Ms Leida the following:
1] I note from the registration page for the conference that the fee for “Student Non-Member” is £50.
Are any concessions available for members of the public with an interest in the subject of this conference?
2] Are representatives of ME/CFS patient organisations and charities (or their press officers) being granted seats at this meeting?
3] Is it anticipated that transcripts and/or a recording will be made available of some/all of the speakers participating in this event and if so, will these be available to members of the public?
In her response, Ms Leida confirms:
That the ‘Chronic Fatigue Syndrome’ meeting is a conference specifically designed for a medical audience, in particular it is intended for all health professionals who are involved in the assessment and treatment of those with chronic fatigue syndrome. There is thus no fee for members of the public.
That no places are being granted to ME/CFS charities or patient organisations, and the meeting is not open to the Press.
That here are no plans to make a transcript of the meeting available to the public.
Ms Leida also adds that the RSM is considering planning a ‘Medicine & Me’ meeting on ‘Chronic Fatigue Syndrome’; that the ‘Medicine & Me’ meetings are specifically designed for patients; that they bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition; that they aim to provide a forum in which patients’ concerns about their illness are given top priority; that those meetings provide an opportunity for patients and their families to share their experiences, to hear about the latest research and to question the experts.
I will be asking Ms Leida to keep me informed about dates and arrangements for any ‘Medicine & Me’ open forum meeting on ‘Chronic Fatigue Syndrome’ that the RSM might be planning and which clinicians, researchers and “experts” might be anticipated attending.