Online workshop: Clinical Trial Platform Studies and Lessons for ME/CFS research, 6th June 2024

Andy · Apr 18, 2024

"Please join us for this online discussion about the Octopus multi-arm, multi-stage treatment trial for multiple sclerosis and lessons for clinical research in ME/CFS particularly for drug repurposing studies.

This is the second 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."

More details at https://www.eventbrite.com/e/clinic...ssons-for-mecfs-research-tickets-877436745927

Dolphin · Apr 19, 2024

From: Helen Baxter

Further to the information below, people can send in questions whether or not they are attending, and the organisers will try to get the speakers to address any questions sent in. It is hoped that the workshops will be recorded. If so, the recordings will be made available online.

Kind regards
Helen Baxter
25% ME Group

Dolphin · May 18, 2024

The UK ME Association have done a post that ties together the information on the various workshops
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Research: Working together to find answers to ME/CFS!
May 8, 2024

A series of online workshops are running this summer for researchers, health professionals and people with ME, with the aim to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities.

https://meassociation.org.uk/2024/05/research-working-together-to-find-answers-to-me-cfs/

https://twitter.com/user/status/1788144219481108894

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Kitty · May 18, 2024

Given the discussion on the thread about the MEA-funded clinical assessment tool, the session on clinical trial design might be an opportunity to submit some questions:

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.
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Dolphin · Jun 1, 2024

ME Research UK post on the 4 workshops:
Research Workshops – attendance invitation

https://www.meresearch.org.uk/research-workshops-attendance-invitation

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Online workshop: Clinical Trial Platform Studies and Lessons for ME/CFS research, 6th June 2024

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Online workshop: Clinical Trial Platform Studies and Lessons for ME/CFS research, 6th June 2024

Andy Committee Member

Dolphin Senior Member (Voting Rights)

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Kitty Senior Member (Voting Rights)

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