Watch now: ME/CFS research workshops
July 29, 2024
Hundreds of people living with ME/CFS, researchers and clinicians recently came together in a series of online workshops designed to stimulate clinical research in ME/CFS.
Action for M.E. is pleased to be able to share support by hosting these workshops and now sharing the recordings on our YouTube channel.
The workshops were organised by Monica Bolton, a Patient and Public Involvement member of the Research Working Group tasked to input into the Government’s ME/CFS Delivery Plan, with support from Alan Mould.
Their aim is 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.
Clinical trial design in people with ME/CFS (4 June) Participants looked at how to optimise this, possibilities for a core outcome set and lessons from other disease areas. Watch the recording and/or review the agenda and presenters' slides.
Clinical trial platform studies (6 June) An online discussion about two Platform studies, the Octopus treatment trial for multiple sclerosis, and STIMULATE-ICP for Long COVID which included a drug repurposing clinical trial, drawing out lessons for clinical research in ME/CFS, particularly for drug repurposing studies. Watch the recording and/or review the agenda and presenters' slides.
Drug repurposing clinical trials in people with ME/CFS (26 June) Including discussing two clinical trials of low dose naltrexone (LDN) in fibromyalgia, clinical studies in people with ME/CFS in the UK and the clinical use of potential drugs such as LDN. Watch the recording and/or review the agenda and presenters' slides.
ME/CFS research and underserved groups (16 July) This workshop looked at the stigmas surrounding chronic illnesses, improving diagnosis and health care provision, and widening recruitment and participation in clinical trials, for people with ME/CFS, particularly those who are already minoritised or socially disadvantaged in society, the severely affected and children and young people. Watch the recording and/or review the agenda and presenters' slides.
Further work and potential collaborations arising from these workshops are being taken forward. For more information, please email Monica and Alan.
