What are energy impairment and ELCI?
Introducing the key features of energy-limiting chronic illness (ELCI) and energy impairment and why we use these terms.
Energy-limiting chronic illness (ELCI) is an umbrella term to describe long-term health conditions in which severe fatigue – or rather energy impairment – is a key disabling feature. ELCI and energy impairment are terms that have come out of our participatory research and they are important to our advocacy work as a Disabled People’s Organisation.
Through our multiple surveys and focus groups among the chronic illness community, we found that, while different diseases have their own unique clusters of symptoms that impact differently on each person, the predominant and most restricting feature of many chronic illnesses is fatigue or limited energy, as well as pain. The term we use for this is ‘energy impairment’.
There’s a reason we call it energy impairment, and not just fatigue.
Fatigue in both medical and general contexts, is seen as a subjective sensation of tiredness that you can push through. Medical science unfortunately lacks the tools to differentiate fatigue in healthy populations, due to certain occupations for example, from fatigue found in chronic disease. But fatigue in chronic illness is qualitatively and biologically different from universal fatigue or tiredness. So the term energy impairment, is used to convey this difference, and to describe an objective loss of function or impairment, not a subjective state.
We use the label ELCI for conditions where energy impairment is a predominant feature. It includes neurological, musculoseletal, auto-immune diseases, as well as obviously ME and fibromyalgia. The umbrella term ELCI now incudes Long Covid.
What can we say in demographic terms about ELCI? The label ECLI is closely aligned to the impairment category of “stamina/breathing/fatigue”, used by the Office for National Statistics for social surveys on disability. Impairment of stamina breathing or fatigue affects one in three disabled people of working age. This statistic comes from a data set collected by the Department for Work and Pensions, called the Family Resources Survey. And yet this category of SFB, which is close to concept of energy impairment, is not used in any government research into disability employment rates. It is not mentioned in the design of employment support, nor is it accounted for in the Work Capability Assessment (WCA).
Energy impairment is much more profound and multidimensional than fatigue.
The key components of ELCI that affect work capability identified in our research are
- the experience of ‘payback’
- the presence of cognitive fatigue and dysfunction,
- a fluctuating pattern,
- in some cases, sensory sensitivity.
Living with energy impairment means having a very limited reserve of energy that gets depleted by the slightest activity, like a mobile phone battery that never charges more than say 20%. And this reserve is drained by both mental and physical tasks. Living with ELCI means we calculate the cost of every small aspect of daily living and ration out energy accordingly.
In terms of work, what this means is that the very act getting dressed and feeding yourself might be as much or more than you can achieve in any one day with your energy reserve. There is nothing left for travelling to a workplace, let alone getting through a working day. If you have less severe energy impairment you may manage to hold down a job,. But you can only do this at a the expense of the social and leisure activities outside of work.
Energy impairment should be understood as a broad spectrum of impairment. Its extremes range from people who are bedridden and need support with self-care, to people who may be able to function at work and appear non-disabled on the outside but are fighting a battle for recognition of their support needs and paying a high price for working in the rest of their lives.
Payback is the idea that if you exceed the energy that is available to you, you pay a high price in terms of increased symptoms and increased impairment afterwards, for example being bedridden for days. In some diseases, where this is particularly acute, payback is known medically as ‘post exertional malaise’. This means the issue of whether we can or can’t do something is complex. We may even struggle ourselves to say with certainty what we can realistically do.
Energy impairment causes cognitive difficulties as well as restricted mobility. The cognitive aspect of ELCI is every bit as restricting as the physical side, and in many ways is harder to adjust for or accommodate, and much less well understood. Cognitive fatigue possibly has the biggest impact on work capability, and yet is not factored into disability assessments.
Fluctuation is a feature of ELCI. But it is a lot more complex than the idea that we have good days and bad days. With many systemic illnesses, symptoms do vary over a period of months, or weeks, or even within a single day. But our functional capacity also varies greatly according to how we use our energy within a day or week and the payback that results. And this means that for us disability is a dynamic experience, very different to stereotypical ideas about disability as a fixed state.
Sensory sensitivity is important to mention in relation to work. With some chronic illnesses, everything from harsh lighting, to background noise, to everyday chemicals in hygiene and cleaning products can exacerbate symptoms and create barriers to work.
Why use the label ELCI?
Because together we are stronger. Our research suggests that, whether someone has fibromyalgia, lupus, ME/CFS, MS or Long Covid, the issues they face with the benefit system and in the workplace are very similar. Rather than advocating separately, for one diagnosis at a time, we should join together as a large cohort of disabled people to have our voice heard.
As a first step towards social change we must demand that government departments collect data about, and develop policies for, disabled people with energy impairment and ELCI.
This is a brilliant description of my lifevwith Fibromyalgia, thank you. Sharing to my network.
Can you add a share for Instagram please? For me Instagram is most ELCI friendly of the social media platforms.
Hi Sarah,
Thanks for your message. We will try and get an Insta button on all our pages / posts, but currently short of people with relevant skills to help us do the work needed to keep our site as up to date as possible.
Fran Co-Chair
Energy Impairment and Energy Limiting Chronic Illness is a much better way of describing the fluctuating energy problems I experience. The consequences of not having enough energy are massive.
The latest ‘buzz’ at my GP Surgery from the start of 2021 is pushing for referrals to the ‘Unexplained Symptoms Clinic’, which on paper appears to me to be CBT & GET by stealth. Yet another metaphorical kick in the head to someone who has a substantial medical history of M.E., Fibro, auto-immune symptoms, etc. and years ago naively placed trust in the medical healthcare ‘professionals’, like a lamb to the slaughter, attempting these inappropriate strategies with the outcome of long term detriment of my fragile condition, and yet they are once again banging-on about repeating the same pathway! After 20 years this is utterly disgraceful.
Spot on!
Thank you for this excellent summary.
It is the best description of struggling to live with chronic health limits that I have read to date.
Wishing you and all better days ahead.
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I appreciate knowing about this organisation. I have suffered for over 20 years with M.E., Fibromyalgia, POTS, and more. I have no one available to help me who accepts the reality of Energy problems in my life. It is so discouraging.
I hope there will be continued awareness resulting in better quality of life.
Such an excellent summary and overview of what life is like for us. Thank you!
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In the US, official Disability is not based on any diagnosis but on specific functional impairments. US Social Security Disability opens the doors to non-urgent medical transportation, caregivers (carers) that come to the home to assist with care needs, prescriptions and medial appointments. These are lifesavers. Your page provides excellent support and information for US sufferers who need to provide this kind of detail, in order to support their Disability application. Thank you so much.
I value your focus on everyday functionality as a determinant of ELCI.
Would you please include Mitochondrial Disease in your list of energy limiting conditions.
Mitochondrial disease affects how the body creates energy at the cellular level…
with profound fatigue and extreme lack of energy being hallmark symptoms. It’s estimated that almost 1 in 4000 people have a mitochondrial disease. Many are undiagnosed. Useful advocacy organizations to check out include: the UMDF, MitoCanada, and MitoAction.
I floundered for over a decade with extreme energy limitations. And we people, well, we know the drill: no energy, no functionality, no work, no money, no diagnosis, no physical support, no medical care, and an ever-declining social circle.
Receiving an actual medical diagnosis helped me better understand and cope with my challenging energy-related health condition. After being mostly bed-bound for 2 years, pre-diagnosis… my post-diagnosis world opened up multiple pathways for improving my wellness and functionality. Now, on a good day, I can walk around the block, do one load of laundry, and cook a nutrient-dense pot of food. I can also choose to scrap the day’s walk and laundry, in order to share a pot of tea with a friend. My life is richer and fuller.
If primary mitochondrial disease (i.e. inherited) or secondary mitochondrial dysfunction (i.e. acquired) is a key component of your ELCI, I hope that improved understanding and/or diagnosis helps you receive appropriate care and disability supports.
Cheers, P.
Yes! Thank you! Graphics accurately illustrate my life with Energy Impairment & ELCI. Hopefully Canada and North America will soon adopt these terms. We must continue to advocate together as the enormous global cohort that we truly are. More voices. More research. Better understanding. Better quality of life!
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Wow! I’m sending this to my boss as we’re discussing a return to work. It’s so well written and easy to absorb.
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This is by far the best description of my life. When I tell people I have CFS, Fibromyalgia and OA I can see the shutters come down when I try to explain the fatigue, I usually refer to the battery analogy or I describe it as ‘exhausted to the roots of my teeth and in the marrow of my bones’. Its is not just ‘tired’ that can be fixed by sleeping, I very often wake up feeling worse than when I went to bed. Unfortunately I have had to learn to live with it by pacing myself and being aware of payback or PEM if I overdo it or ‘push through’!
I agree with this but from my experience different functional areas have their own batteries which can be depleted differently to others. My physical battery is good and I exercise regularly without any problems but my sensory processing battery and my emotional battery have reduced capacity so I am more likely to crash from a visit to a museum, a busy restaurant or airport, or after arguing with a loved one, than from physical exertion. I really dislike articles which give the impression that exercise is bad for people with long covid as there are many of us who find it actually helps.
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