"Chronic Illness Inclusion is a Disabled People’s Organisation leading social change for people with energy-limiting chronic illness, energy impairment and chronic pain. .... 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. Examples of ELCI include: ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, lupus, chronic pain, Ehlers Danlos syndrome, long Covid, as well as conditions causing: respiratory failure, kidney failure, inflammatory bowel conditions, sickle cell disease, autoimmune conditions, neurological conditions, endocrinological conditions, and rheumatological conditions. 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." https://chronicillnessinclusion.org.uk/
Latest newsletter, "Flexible Working, Round up of 2021" "Welcome to our first news bulletin of 2022. This year we plan to grow our capacity for shaping policies and perceptions around chronic illness and energy limiting conditions. We hope to bring together an alliance of organisations representing different energy-limiting chronic illnesses like fibromyalgia, lupus, EDS, ME and Long Covid. Together we will speak up with one voice and fight for our rights as disabled people. In the meantime you can read about everything we got up to in 2021 and a comment piece about flexible working. Will the 'new normal' of flexible working work for us, in creating more inclusive job opportunities?" https://mailchi.mp/cc0d9decaf52/cii-news-flexible-working-round-up-of-2021
. We move in chronic illness time, or what some refer to as 'crip time'. That’s rather, um, robust language reclamation for an organisation hoping to be the single voice for a wide range of patient groups.
Crip was reclaimed by disabled people years and years ago, though—some of my friends often use it in that way.
i hadn’t realised. Should google first and post later, really. Crip time in particular seems to be an established thing. Not mad keen on it, but then I’m only an ambulatory user of mobility aids. I’ve seen in other contexts that semi-detached community members can feel squeamish about reclaimed terms.
Poverty and employment rates What do we know about energy-limiting conditions (ELCs) in the population? A report by Ben Baumberg Geiger and Rebecca de Vanney takes an important step in acknowledging ELCs as a type of disability. https://chronicillnessinclusion.org.uk/2022/08/13/poverty-and-employment-rates/
