Lmst

#energylimitingconditions

Wearable devices measuring heart rate, and heart rate variability are helpful for managing #pem in people with #energylimitingconditions

https://madevisible.podbean.com/e/14-wearable-technology-and-patient-led-innovation-with-dr-david-putrino/

The Visible Band 2.0, or Garmin devices seem to be the most popular products for research and treatment, but have ethical drawbacks and privacy concerns (subscriptions, vulnerable to enshittification, repair hostile).
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Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001

Screenshot from latest Science for ME weekly update

#EnergyLimitingConditions #Spoonie #chronicillness #Spoonies #ELCI #MEcfs #LongCovid #ChronicFatigue @mecfs @longcovid @pots

Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept — Hale et al.
"The term 'energy impairment' is a substitution for the term 'fatigue' that disrupts many of the impairment typologies used in UK social administration. We contend that current terminology not only fails to capture the embodied experience of, and language used by, people living with chronic illness, but it often actively denies this lived experience."

New:
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

Free
https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001

Sympathetic exploration of topic

#EnergyLimitingConditions #Spoonie #Fatigue #chronicillness #Spoonies #ELCI @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid #POTS @pots

Abstract
The terms “energy limiting condition” (ELC) and “energy impairment”locate the embodied experience of chronic illness into a category of impairment for the purposes of social policy and administration of disability.

This article discusses the origins of these concepts in the UK-based Chronic Illness Inclusion Project (CIIP).

Selected findings from the CIIP’s mixed-methods participatory research demonstrate how energy impairment, and related terms, arose as a practice of resistance against the invalidation of “fatigue” as impairment, giving rise to a transdiagnostic disability identity, and a strategy for self-advocacy.

Theoretical tensions between the rejection of impairment within disability studies and the emancipatory aims of the CIIP are discussed, as well as the political history of fatigue within the disability category.

Impairment labels, as a necessary evil, should reflect disabled people’s experience and identity, and further research should uncover their conditions of production.

Overloaded week continues to be overloaded.
And I'm dreading next week as it should have been preceded by plenty of rest this week.
It's unlikely I'll escape a fibromyalgia flare but I'm hoping I have enough coffee to get through the 'really must do' events first. Those are the workshops, panels and critical meetings.

My urgent to do list is in hold ...

#EnergyLimitingConditions

It's been a long time since I had two consecutive days with no online meetings or in-person contact. Tomorrow will make it three days unless something changes.
It even rained so I didn't need to get dressed to water the tubs on the patio.
After a busy few weeks this is much needed off time.

#EnergyLimitingConditions

My #spoonie pals on Mastodon, I've gotten a bit of flak for using this term here, from presumably able-bodied folks. I'm interested in talking to people with #LongCovid #ME #fibromyalgia and other #ChronicIlnnesses and #EnergyLimitingConditions--originally I was talking about gardening, too. Do you use spoon theory or another metaphor? [What I live with isn't just 'old age' or 'sickness'--its #ableism to imply that we are just one thing or another to fit a convenient, received notion.]

3 weeks into my 'month off' and I felt like working on my business today, I did 45 minutes client work this morning, had a rest, walked the dogs with my daughter, had another rest, and did 45 minutes work on my business this afternoon. Now I'm ready for bed and it's only 6pm. 🥱

#MEcfs #ChronicIllness #EnergyLimitingConditions #PEM #VirtualAssistantUK

The only people who truly 'get' what it's like to live with chronic illness are those who also live with chronic illness.

#ChronicIllness #InvisibleIllness #ChronicPain #MEcfs #MEcfsAwareness #EnergyLimitingConditions

So this is what I have 'planned' today:

📖 Read my true crime magazine
🐕 Take the dog for a stroll in the sunshine
🧘‍♀️ Guided relaxation
🎨 Do some foil scratch art
📚 Read my non-fiction book
📺 Watch a documentary

Tomorrow will be more of the same, plus I'll be visiting my dad because I haven't seen him since Friday, and hopefully meeting up with my daughter in her lunchbreak to walk our dogs together 💙

#MEcfs #MEawareness #EnergyLimitingConditions #chronicillness
#invisibleillness

Having a much-needed 'Bed Day' today.
Brain is generally a little fuzzy but insisting on trying to work - yet I can't focus long enough to work my way through the 3 sets of legal/finance docs waiting for me. I need to ignore them rather than mess up.
#ELC
#EnergyLimitingConditions

#LongCovid #EnergyLimitingConditions

I hope they will find funding to extend this research to long covid's poor relations - fibromyalgia and CFS/ME.
If they find the same issues with mitochondria this would throw out any lingering tendencies for health professionals to revert to telling us to do a bit more each time/pushing ourselves more each time (GET) - not pacing to use our limited energy carefully.
Or, as the last physiotherapist told me, 'conditioning'.

https://www.theguardian.com/world/2024/jan/04/people-with-long-covid-should-avoid-intense-exercise-say-researchers

#ELC #EnergyLimitingConditions

I was finally diagnosed with 2 ELCs a few years ago.
Even diagnosing physical illnesses that could be 'seen' by tests or examinations took years.
So my medical file is full of false diagnoses of mental illnesses that influence every medical professional I see and explain my reluctance to get any new illness or group of symptoms seen to.
I 'joke' I only feel OK going to my GP or the hospital if I can see a bone sticking out after a fall.

https://www.youtube.com/watch?v=AtdpgiNs_xg&t=0s&ab_channel=ChallengingDisbeliefandDisregard

Man Utd languishes mid-table in terms of disability access
https://www.thecanary.co/uk/2023/06/26/man-utds-poor-performance-disability-access-hides-deeper-issue/

#Disabled
#ManUtd
#OakTreeMobility
#OakTree
#Accessibility
#Accessibility
#WheelchairAccessibility
#AudioDescription
#BlueBadge
#SensoryRoom
#ChronicIllness
#ChronicallyIll
#AccessibleStadiaGuide
#AccessibilityLeague
#EnergyLimitingConditions
#ELC
#PremierLeague
#POTS
#Poverty
#Classism

#energylimitingconditions

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