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ELCResearch - a new mailing list for research and coproduction

 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.

You are invited to subscribe to a new mailing list for future research on chronic illness and energy limiting conditions called ELCResearch. The list is managed by myself and Bethan Evans, Lead for the Disbelief and Disregard project at Liverpool University.

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
This list will be used to
  • 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 



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What are energy-limiting conditions? An introduction to chronic illness at work

What are energy limiting conditions? A guide for employees and their managers is a new resource, produced for Astriid charity. I hope it will be a gamechanger for unlocking conversations about health, disability and work, and lead to more people with chronic illness getting the support they need at work. I've lived with an energy limiting condition (ELC) for decades, but for a long time, I didn’t have the language to describe my needs and ask for adjustments that could have helped me take part in life.  I didn't even know if I was allowed to do so, because I didn't see people like me in representations of disability or in the landscape of disability rights.  The work I did with Chronic Illness Inclusion (CII) taught me that many of us feel the same. The gap between our day-to-day reality and society's understanding of chronic illness as a form of disability is vast. Many people report that this conceptual gap, and the lack of understanding from everyone - from friends