Andy
Retired committee member
"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/
....
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/
