As part of the DHSC Delivery Plan process a research working group was established and a number of workshops have been planned which aim to stimulate clinical research into ME/CFS, to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in areas of unmet need. The workshops have been designed to be as ‘ME-friendly’ as possible, to allow for full participation by all.
Registration to these online workshops is free and each event is on a standalone topic of interest and so not all workshops require to be attended. Workshop registration, together with full details of speakers, is available on the Eventbright link.
1. Clinical trial design in people with ME/CFS – 4 June 13:00 to 15:30
The speakers and discussions will look at clinical trial design in people with ME/CFS – how to optimise it, possibilities for a core outcome set and lessons from other disease areas.
Eventbrite link for more information and to register
2. Clinical trial platform studies – 6 June 11:00 to 12:00
An online discussion between the Principal Investigators of two Platform studies, the Octopus multi-arm, multi-stage treatment trial for multiple sclerosis, and STIMULATE-ICP, the multi-site study of long COVID examining current care, developing an integrated care pathway and drug repurposing clinical trial. Are there lessons for clinical research in ME/CFS, particularly for drug repurposing studies?
Eventbrite link for more information and to register
3. Drug repurposing clinical trials in people with ME/CFS – 26 June 13:00 to 15:30
The speakers and discussions will look at drug repurposing including clinical use and research findings, study design, and potential drugs such as low dose naltrexone (LDN).
Eventbrite link for more information and to register
4. ME/CFS research and underserved groups – 16 July 10:00 to 12:30
There is very little research on ME/CFS and underserved groups. The cumulative lack of validation of ME/CFS as a physical illness has led to long-term effects on service provision and research direction and funding. Services for ME/CFS are inadequate or non-existent in some parts of the UK, and may not be updated to reflect the 2021 ME/CFS NICE guideline; Groups who are particularly at risk of lack of support from NHS and social care services are children and young people, and those who are severely or very severely affected.
This workshop will look at three areas, and will include breakout groups for discussion in each of these areas –
a) improving diagnosis and health care provision in people with ME/CFS particularly those who are already minoritized or socially disadvantaged in society.
b) disadvantaged groups within ME/CFS – the severely affected and children and young adults.
c) widening recruitment and participation in clinical trials for ME/CFS.
Eventbrite link for more information and to register
In order to stimulate discussion, the organisers of these workshops wish 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, attendance by people with ME/CFS is encouraged to all for sharing of the views of those affected by the disease.
