ME/CFS Research and Underserved Groups

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.

Programme

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

Speakers

Dr Anna Hood University of Manchester, Antiracism Coalition in Pain Research. Her work with children and young people with sickle cell disease included suggestions for cognitive and psychological outcome measures in clinical trials, and observing the cumulative effects of racism-based trauma on pain.

Helen Baxter 25% ME Group, advocate for people with severe and very severe ME/CFS, who has published papers on life-threatening malnutrition in very severe ME/CFS and on how to recruit and retain people with severe and very severe ME in research.

Professor Chris Ponting Chair of Medical Bioinformatics at the University of Edinburgh and Principal Investigator of DecodeME, (a very large genetic study of ME/CFS compared to the general population).

Professor Shaun Treweek Chair in Health Services Research, University of Aberdeen, who leads the Trial-Forge initiative of the NIHR, aiming to improve trial delivery for underserved groups.

Professor Nisreen Alwan Professor of Public Health, and Dr Donna Clutterbuck, Research Fellow, University of Southampton, the Long Covid Inequalities research team for the STIMULATE-ICP study of Long COVID.

There will be time for discussions and questions on the day. In order to facilitate collaboration and formulate possible routes forward for research, subject specific breakout rooms will be hosted by experts in each area. When registering, please chose one breakout group that you would like to join. Breakout groups are tabled to last 30 minutes at the end of the workshop. Please remember, the groups are aiming to generate research ideas and discuss ways forward for research in each of these areas. Please do not use them as forums to discuss individual health issues as we cannot provide personal help or advice in these workshops.

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, and people with ME/CFS and their carers.

You can also contact the organiser on underserved-groups@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 to join the event, which will be held online by zoom (and is free to join). On regsitering, you will be sent an e-ticket to your email address with a zoom link for the event.

All participants will need to register themselves, but feel free to pass this information on to others 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.