"Please join us for this online workshop examining ME/CFS research and underserved groups. There is very little research on ME/CFS and underserved groups. The cumulative lack of validation of ME/CFS as a physical illness has had 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 NICE guidance; Groups who are at particular 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. Certain groups of people with ME/CFS are doubly-disadvantaged. From long-COVID research it appears likely that the needs of those who are already minoritized or socially disadvantaged in society are being hugely neglected, including low rates of diagnosis and referral to specialist services, and almost complete absence from participation in research in the UK. So where to start? We will focus on three areas with speakers and time for discussion in each area, to formulate research priorities and discuss next steps. The areas are;- 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 people. c) widening recruitment and participation in clinical trials for ME/CFS. This is the fourth 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/mecfs-research-and-underserved-groups-tickets-877458541117
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
