I founded Chronic Illness Inclusion (CII), an advocacy organisation for people living with energy limiting conditions, chronic illness and pain. CII began life as a funed research project in 2017. From the start, the CII Project mailing list was about building a community of people living with chronic illness and chronic pain who didn't feel represented by existing disability or social justice advocacy organisations. Over the years I, and others, ran various surveys and consultations that gave subscribers the opportunity to have their voice heard on issues such as social policy, disability rights and healthcare services. The level of engagement and participation in research from subscribers to the CII Project list was amazing.
Sadly, CII was not viable as a vehicle to continue the research and advocacy work that was at the heart of the initial research project. It was too hard to get funding. Most of all, it was not sustainable for me, as someone living with chronic illness, to lead the organisation. I stepped down as Director of CII in 2022.
I'm pleased to say that thanks to the leadership of Prof Bethan Evans at Liverpool University, we have a new mailing list. We and a group of other researchers, all living with ELCs, are committed to doing further research, as and when research funding becomes available. We also commit to promoting other research projects that we think will benefit the chronic illness community.
ELCResearch is an announcement list to share updates on research and coproduction on energy limiting conditions. The list is for:
- anyone living with a chronic illness or disability that causes energy impairment, fatigue or pain.
- Allies of the above
- Researchers working on ELCs and disability
- Communicate updates from our research on ELCs
- Recruit participants or survey respondents for research projects about ELCs and chronic illness and disability.
- Share opportunities to get involved in projects about chronic illness and disability, for example advisory roles, and voluntary or paid roles.
- Promote events directly related to ELCs and chronic illness, for example webinars.
- Share publications and other resources directly related to ELCs and chronic illness
Sign up here https://www.jiscmail.ac.uk/cgi-bin/webadmin?SUBED1=ELCRESEARCH&A=1
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