A change of leadership for Chronic Illness Inclusion

Head and shoulders Photo of Catherine Hale

Stepping down as Director of CII

Catherine Hale writes:

Five years after I founded Chronic Illness Inclusion I am stepping down as Director of the organisation. CII started life as a research project, but it was always imagined as more than a one-off project. From the start, it was about building a platform to have our voices heard by professionals and policy makers. It was born from my sense, back in 2016, that the chronic illness community and the disability rights movement were too far apart. And from the realisation that this made it too easy, in times of austerity, to exclude chronic illness from systems of disability support and rights. As an advocacy movement, we exist to combat the idea that chronic illness is not a ‘proper disability’.

It was clear from the research that people saw CII as a ‘voice in the wilderness’, and that our work needed to continue. So, after the research funding ended in 2020, the Advisory Group formed a user-led Disabled People’s Organisation, joining networks of other DPOs. For two years we have continued to represent and advocate for people with energy limiting conditions (ELCs) and chronic illness, with almost no funding. We have explored partnerships to enable us build and grow the organisation. This is still a work in progress and I’m very grateful that others in CII have the passion to take it forward.

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Disbelief and Disregard

Disbelief and Disregard: gendered experiences of ELCI in England. A partnership between Chronic illness Inclusion, Liverpool University and Liverpool Hope University. A research project funded by British Academy/Leverhulme

A research project on gendered experiences of energy-limiting chronic illness (ELCI) in England


The Disabled People’s Organisation Chronic Illness Inclusion (CII) have developed the term Energy Limiting Chronic Illness (ELCI) to allow for collective advocacy work across conditions in which people experience impairments in energy/stamina/breathing/fatigue such as neurological, musculoskeletal, auto-immune diseases, ME/CFS, fibromyalgia and Long Covid. Through vital research on ELCI, CII have also developed the term ‘systemic disbelief’ to identify the culture of disbelief and disregard that is encountered by people with ELCI in interactions with a range of institutions: healthcare, work, welfare, social services, leisure, etc. This disbelief creates barriers to equality and inclusion for people with ELCI, and relates to even fundamental disagreement over whether conditions are biophysical or psychosomatic.

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Energy-limiting conditions and Human Rights

photo of Leonora Gunn wearing a graduation gown

Earlier this year, Disabled People’s Organisations gave testimony to the United Nations about the UK government’s progress, or lack thereof, in implementing our human rights. Chronic Illness Inclusion’s testimony was part of this report, but now we can share our full, unedited submission. Lead author, Leonora Gunn, explains the process and the key evidence we gave on behalf of people with energy-limiting conditions and chronic illness.

Some background: What is the UNCRPD? And what is a ‘Shadow’ Report?

The United Nations’ Convention on the Rights of Persons with Disabilities    (UNCRPD) is the first international treaty to enshrine in law the full human rights of all disabled people. It was drafted through an unprecedented process of collaboration between the United Nations, disabled activists and Deaf and disabled people’s organisations from all over the world, and was ratified by the UK Government in 2009.

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ELCs and Human Rights

UNCRPD Shadow Report: Chronic Illness Inclusion full submission

Chronic Illness Inclusion’s submission to the UNCRPD Shadow Report


Read our full submission to Inclusion London on how the rights of people with energy-limiting chronic illness (ELCI) have suffered in relation to healthcare, social protection, accessibility, work and employment, situations of humanitarian emergency, and more.


Click here for a pdf version of the report

Click here for a MS Word version of the report

Read the blog post by lead author, Leonora Gunn.


The wilderness of medically invisible disability

The Wilderness of Medically Invisible Disability. Portrait photos of speakers Catherine Hale and Alison Allam

Disbelief and disregard in relation to medicine, chronic illness and disability

This video, with transcript below, was part of a webinar held by Liverpool University on 24th May 2022.


Hi, I’m Catherine Hale. I’m the Founder and Director of Chronic Illness Inclusion. My colleague Alison and myself are very excited to be embarking on a two-year research project, a collaboration with Bethan Evans at Liverpool University and other colleagues. My colleague Alison is going to talk you through the research on healthcare experiences of women with chronic illness, chronic pain and other energy limiting conditions.

This research was the catalyst for the project that we’re going to be embarking on. But first I want to give you some background on why this research was so important to our community. So the title of our talk, “The wilderness of medically unexplained, [sorry] medically invisible disability” is taken from an article in the British Medical Journal by Lisa Steen in 2016 and her article was called “The wilderness of the medically unexplained”.

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Act Now on disability poverty

Join the Disability Poverty Campaign. Write to your MP using our campaign too. Demand an emergengy uprating of benefits of at least 8% to match inflation

by Joel Lamy

The other day a work colleague told me she had finished at 5pm, instantly fell asleep then woke up just in time to start again the next day.

She has a hidden disability – and her experience is not unique – for many, the need to work full-time leaves them shattered and without the energy to even cook their food, never mind leave the house.

Not only is this an isolating and mentally-draining experience, it also means higher fuel energy usage – a problem when bills are soaring and unlikely to come down any time soon.

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Webinar on disbelief and disregard in healthcare

Challenging Disbelief and Disregard in relation to Medicine, Chronic Illness and Disability

photo of a stethoscope resting on top of a medical textbook

Free webinar 24th May 1-3pm BST

Chronic Illness Inclusion is jointly hosting a webinar with Dr Bethan Evans and colleagues at Liverpool University’s Centre of Health, Medical and Environmental Humanities.

This event brings together academics and activists working in relation to disbelief and disregard in medicine, chronic illness and disability. It will focus in paticular on the relationship between disbelief/disregard and energy, understood in two ways: first in relation to chronic illness/disability that involves energy limitation, and secondly in relation to the ways in which activism and advocacy in relation to medicine, chronic illness and disability takes, and depletes, energy.

The event will involve two roundtable discussions, with opportunities for the audience to ask questions.

Organised by: Dr Bethan Evans, Catherine Hale and Alison Allam (Chronic Illness Inclusion), Dr. Lioba Hirsch and Dr Morag Rose (University of Liverpool), Dr Ana Bê Peirera (Liverpool Hope University).

Speakers include (in addition to the organisers):

Brianne Benness (No End in Sight),

Dzifa Afonu (Healing Justice London),

Leonora Gunn (University of Leeds and Leeds Disabled People’s Organisation),

Katherine Cheston (Durham University),

Aaliyah Shaikh (City University, London),

Dr Emma Sheppard (Coventry University)

Aleyah Babb-Benjamin (National Voices),

Jenny Ceolta-Smith (Long Covid Support).


Recorded presentations from speakers will be made available ahead of the event for people to watch at their own pace.

BSL interpretation and auto-captions will be enabled.

To read more about the event visit The Centre for Health, Medical and Environmental Humanities website

To register for this event click here 

Will the future of work include people with energy limiting conditions?

We need to ensure that the flexible working future includes disabled people

photo of an open laptop and a phone on a bed

Flexible working is the future; most businesses as well as workers seem to agree. We need to make sure that this future benefits and includes disabled people, especially those of us with energy limiting conditions (ELCs).

Our research with Leeds University Business School demonstrated what people with ELCs want, and need, in order to be able to hold down a job. In short, they need adjustments are to the time, pace and place of work. Indeed, working from home, working reduced hours and having autonomy over the time and pace of work are the main components of ‘flexible working’ as defined by the government.

We were so used to our requests for various elements of flexible working to be refused by employers before the pandemic. It was too difficult, they said. Then, almost overnight, working from home became the new normal in March 2020.

This digital transformation opened up so many new horizons and opportunities for those of us who live in permanent lockdown due to an ELC. If home working and flexible working move to a more permanent footing, will this translate into more job opportunities for us in future?

Making flexible working the default

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2021 – a year at Chronic Illness Inclusion


Our mission at CII is to shape policies, perceptions and practices to improve the lives of people with energy limiting conditions.

Our vision is a world in which our experience of disability is heard, believed and understood, our rights as disabled people are upheld, and our lives have equal value.

We took a look back at everything we did 2021 to realise this vision and take forward our mission. Bearing in mind we are a grassroots organisation, run entirely by volunteers living with chronic illness and energy limiting conditions, we have a lot to be proud of.


Here’s a round up of our activities over the year:

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Changing society’s reponse to energy limiting conditions

Results from a survey by Disability Rights UK and Chronic Illness Inclusion

Disability Rights UK and Chronic Illness Inclusion are pleased to present the results of a survey of 1,710 people living with energy-limiting chronic illness (ELCI).

The high volume of responses to our survey provides us with a mandate, as well as a roadmap, for social justice and change from this large, but often neglected, group of disabled people.

Our findings clearly show that the vast majority of disabled people with ELCI encounter socially constructed barriers to wellbeing and participation in society, beyond the impact of their symptoms or impairment. Many of the barriers are unique to this group.

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