This, by Ed Yong, is one of the best articles I've seen on fatigue as a symptom of ME/CFS/Long Covid. Discusses chronic fatigue as a failure state of the body with specific identifiable pathologies, rather than as a "tiredness". Proxy link to bypass the Atlantic's paywall.

#MECFS #LongCovid #ChronicIllness #ELCI

https://12ft.io/proxy?q=https%3A%2F%2Fwww.theatlantic.com%2Fhealth%2Farchive%2F2023%2F07%2Fchronic-fatigue-long-covid-symptoms%2F674834%2F

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“Isolation is a way of life in the wastelands. You are too exhausted to go anywhere, to do anything, to meet anyone. The possibility of holding down a job is consigned to history. Travel is a privilege which others enjoy.”

#Spoonie #PwME #MEcfs #ELCI #homebound #housebound @spoonies @chronicillness

🧵
Powerful piece of writing about living with an energy-limiting #chronicillness [in her case, #MyalgicEncephalomyelitis]

Essay: 'To the Wastelands' by @GearoidinC

https://www.anniejournal.com/wastelands-geraldine-mccarthy

“No hero’s journey is ever written about the person who just stayed home. Maybe it’s time for that to change” (Nina @VerloreneZeit Jul 11)

#spoonie #ELCI #PwME #MEcfs #pwme #cfsme #spoonies @spoonies @chronicillness #ChronicFatigueSyndrome

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UK TUC report
Workers' experience of #LongCovid
Joint report by the TUC and Long Covid Support

This Trades Unions Congress article includes a summary of legal duties on employers to make reasonable adjustments at work, disability and work related benefits, and a section on energy limiting illnesses including ME/CFS

https://www.tuc.org.uk/research-analysis/reports/workers-experience-long-covid

@longcovid #ELCI #spoonie @spoonies #chronicillness #mecfs #cfs #pwLC #PostCovid

Letter to social-worker on #communication, 4,800 words. Areas included:

relevant illnesses & disabilities;

energy-limiting chronic illness #ELCI ;

speech issues;

listening & hearing issues;

vision issues;

reading issues;

writing issues;

cognitive issues;

sensation-overload issues;

social contact issues;

#NICE guidance #NG206;

conclusions.

Housemate looking for SW’s email. Then I can send if off! It has taken me four weeks to draft up…

#pwME #SevereME #MyalgicEncephalomyelitis

Here are some other ways to get more people into work:
- invest in research into major chronic illnesses, especially in the #ELCI group
- invest in green public transport, to clean up the air & shorten commuting times
- invest in insulation & other work to ensure dry, warm homes.

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“Of people with self-reported long #COVID, 191,000 (9%) first had … #COVID19 less than 12 weeks previously, 1.9 million people (87%) at least 12 weeks previously, 1.2 million (57%) at least one year previously and 645,000 (30%) at least two years previously.”

#LongCovid #ChronicIllness #ELCI #Disability

https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/5january2023

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“An estimated 2.1 million people … in the UK (3.3% of the population) were experiencing self-reported long #COVID (symptoms continuing for more than four weeks after the first confirmed or suspected #coronavirus (COVID-19) infection …) as of 4 December 2022.”

#LongCovid #ChronicIllness #ELCI #Disability

https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/5january2023

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“Be Curious & Put On Your Research Hat

It can be incredibly exhausting both physically and emotionally to explain all that is happening with me. While I appreciate you asking to better understand, it can be insightful to do your own research. Spend time looking at scientific journals, join a support group with me, watch YouTube videos, etc. This will help me conserve my spoons and bring a greater understanding into my experience”

@spoonies @chronicillness #spoonie #ELCI

16/

“I want to work out, be in shape, eat all the right things, climb mountains, be able to drive, sit in the sun, listen to music without earplugs. I want all the normal life things.

It is incredibly frustrating to be trapped in a body that will not give me the energy or health to do so. Please don’t call me lazy.”

#spoonies @spoonies #mecfs #ELCI

15/

“I Am Not Lazy

I want to be able to do all the things I once did. I want to help with chores, errands, cook, wash my hair, run around with our children”

#spoonie #ELCI #MEcfs #spoonielife

From: Citizen Network Research

"Biopsychosocial Model Or Bio-Political Ideology?
Medically unexplained symptoms, welfare reform and the implications for Long-COVID"

Dec 1
Many realise that
🔸the biopsychosocial model lacks empirical support
🔸its application to people with ME/CFS is without foundation
🔸its misuse has damaged the lives of many

NEW by
@HealthHubris
http://ow.ly/iNvL50LSRfS

#ChronicIllness #ELCI #ME #CFS #welfareeform #LongCOVID @mecfs #mecfs #cfsme

Somebody shared the following previousl saying:

"I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much"

Here's the TikTok link: https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070

#Spoonie #ELCI #Spoonielife #chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #ME #MyE #MEeps #CFSME #CFIDS #SEID #NeuroME #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies

Taking tentative exploratory steps here…🐾

Interested in the following and more…
#art #nature #MEcfs #ELCI #creativity #culture #artscommunity #ArtEducation #learning #coaching #faith #grief #hope #sighthounds #myth #folklore #music

@alex it's a really useful term and better explains the impact of #ChronicIllnesses like #MECFS, #Fibro, #EDS, etc. I've been on their mailing list for a while, but it's only now I'm thinking, I should be using #ELCI much more.

@MECFS @ChronicIllness

#WorldWildlifeFund​ #Greenpeace​ #PNUMA​ #WorldNatureOrganization​
#TheNatureConservancy​ #EarthAction​ #TheClimateGroup​
#TheClimateRealityProject​ #ELCI​ #FIPA​ #PICC​ #AT​ #WorldRainforest​
#ECOCIDE​ #StopEcocide​ #LATAMSinEcocidio

PENALIZAR EL ECOCIDIO A NIVEL MUNDIAL.

https://www.youtube.com/watch?v=EtuJeQgtuA4&t=353s