Energy Impairment and Disability Inclusion

Towards an Advocacy Movement for Energy Limiting Chronic Illness - read our NEW report - also available in Easy Read and for screen readers here.

Do you have energy limiting chronic illness (ELCI)?

Are you dealing with health condition(s) that cause symptoms such as physical fatigue, mental fatigue and pain, which significantly restrict your day-to-day activities?

People with ELCI have a range of medical diagnoses, and our symptoms may vary and fluctuate, but the overall impact on our lives is of energy impairment. We have to carefully ration our energy every day in order to avoid aggravating our symptoms. Read more about energy impairment.

If this is you, you are part of an invisible community

Government research tells us that problems with stamina, breathing or fatigue are the second most common form of impairment or disability in the UK. But we are invisible – often confined to our homes or beds, neglected by the medical profession and unable to participate in ordinary life.

According to our research, people with energy limiting chronic illness (ELCI) experience high levels of social isolation, stigma and lack of representation.

People with ELCI have rights as disabled people, but many of us are not aware of this. And we are certainly not getting access to those rights.

People with ELCI have much in common

While our individual medical diagnoses vary, as a group of disabled people we have many things in common:

• Often dismissed or told our conditions are ‘all in our heads’ when we go for medical help. 
• Many of us go years – even decades – without proper diagnosis or treatment.
• Often bedbound or housebound and extremely isolated. Read our FAQ page.
• People around us do not believe in our conditions, how they affect us, or our needs.
• Difficulty accessing benefits and other Government support. 
• Employers, councils, venues and businesses are unwilling to make adjustments that would allow us to participate more in society, such as home or flexible working, and public rest spaces.
• Our conditions are often under-researched due to lack of funding or interest from the medical community.
• We feel invisible, voiceless, even hopeless.

It’s time our voices were heard

We need to be seen, believed, and heard: by doctors, by politicians, by the media and by society as a whole. That’s why we started the Chronic Illness Inclusion Project (CIIP).

The CIIP is run entirely by people with energy limiting chronic illness (ELCI), and we are working together to make life better for every one of us.

We’re working on a manifesto for change that with your help we aim to send to every relevant policy maker and politician in Britain.

Now we want to evolve from a one-off project into a user-led organisation that can campaign for the rights of people with ELCI until we are properly supported to live the best lives we can.

If you have ELCI we’d love you to join us.

If you are a policy maker or medical professional please support us.

Find out more about our research.

Find answers to our Frequently Asked Questions.