Clinical Trial Design in People with ME/CFS

Please join us for this online workshop aiming to stimulate clinical trial research in ME/CFS.

The speakers and discussions will look at clinical trial design in people with ME/CFS – how to optimise it, and lessons from other disease areas.

This is the first in a series of online workshops on clinical research in ME/CFS. The workshops are connected with the Research Working Group set up by the UK Clinical Research Collaboration. The workshops aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in this area of huge unmet need.

Programme

Chair - Professor Harm van Marwijk, Professor in General Practice at Brighton and Sussex Medical School

Speakers

Sarah Gorst – COMET Initiative Project Co-ordinator (Core Outcome Measures in Effectiveness Trials). A Core Outcome Set was identified as a research priority in the 2021 NICE guideline for ME/CFS, and COMET were recently involved in the development of a Core Outcome Set for long COVID.

Sarah Tyson – Honorary Professor of Rehabilitation at University of Manchester, who is currently developing a clinical assessment tool kit for use in ME/CFS clinics.

Caroline Kingdon – Research Fellow at London School of Hygiene and Tropical Medicine, CureME and ME Biobank co-ordinator, who has wide experience of the needs of people with ME/CFS in clinical research.

Anna Williams – Professor of Regenerative Neurology at Edinburgh University, who chairs the Treatment Selection Committee of the OCTOPUS platform study in multiple sclerosis – a multi-arm multi-stage treatment trial.

Jessica Eccles – Reader in Brain-Body Medicine at Brighton and Sussex Medical School, who recently held a Public Engagement Event at Brighton and Sussex Medical School on the next steps for ME/CFS drug repurposing research with feedback from attendees on what adaptations people with ME/CFS needed in clinical studies.

In order to stimulate discussion we want to attract a wide range of researchers and health care workers both from within and outside the field of ME/CFS care and research. Although the workshops are primarily aimed at researchers and clinicians, we encourage people with ME/CFS and their carers to attend to share their views.

We aim to provide time for discussions and questions on the day. You can also contact the organiser on clinical-trial-design@serafina3.me.uk to register any questions for any of the speakers in advance of the event. You can do this whether or not you intend to attend the event.

Register on this page to join the event, which will be held online by zoom (and is free to join). On enrolling, you will be sent an e-ticket to your email address, together with the zoom link.

All participants will need to register themselves, but feel free to pass this information on to colleagues and friends who may be interested in registering.

Please note, the event will be recorded, although you have the option to withhold your name on the day.