#elci — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #elci, aggregated by home.social.
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#PEM #LeonardJason #DSQPEM2 #Questionnaire
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI #ELC
Via Tom Kindlon's ME CFS & related page: News, Research and more on Facebook, @tomkindlon here.
Link to explorationpub.com:
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Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concepthttps://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
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New:
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment ConceptFree
https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001Sympathetic exploration of topic
#EnergyLimitingConditions #Spoonie #Fatigue #chronicillness #Spoonies #ELCI @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid #POTS @pots -
The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.
#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
Link to #Virology blog:
https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf
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It is difficult to believe that #neoliberal #Labour, that is #UKgov, will listen let alone take action needed within the #NHS!
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #Covid #LongCovid #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
Link to #BMJ :
https://ebn.bmj.com/content/early/2024/08/29/ebnurs-2024-104177
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Please consider signing this petition to force #Cochrane to fulfil their promises and to stop delaying & obfuscating.
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
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New US research:
Defining fatigue from the experiences of patients living with chronic fatiguehttps://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2024.1429275/full
From what I can see, this does not refer to CFS specifically but CFS wasn't an exclusion either
#chronicfatigue #Spoonies #Spoonie #Spoonielife #ELCI
#chronicillness @chronicillness
@spoonies
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
#LadyShambles’ take on the #MaeveInquest result, per her worthy comment to @DavidTuller1 & @ValeriEliotSmit’s overview & commentary:
1. M.E. Is a ‘physical’ (as opposed to psychological) disease;
2. M.E. can cause death;
3. #MEKills
Link to #Virology blog:
#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI
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Ongoing failures by #NHS towards #pwME, especially those of us with #SevereME or #VerySevereME, really do need the UK ME charities to step up their game. My suggestion is a national #BuddySystem.
Link to #Blogger: https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MECFS
#PostViralFatigueSyndrome #PVFS #PostViralDisorder
#ELCI -
Today, 8th August, is #SevereMEDay aka #SevereMEAwarenessDay.
I have actually managed to write a blog-post this year!
#pwME #SevereME #VerySevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder
Link to Blogger:
https://crippledqueeranglo-europeanranter.blogspot.com/2024/08/severe-me-day-2024-funcap55.html
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Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:
Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.
#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder
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Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:
Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.
#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder
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Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:
Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.
#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder
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Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:
Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.
#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder
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Re #MaeveInquest :
I should have anticipated that all involved would have mentioned how they had since done various courses etc. in order to raise their awareness, knowledge & expertise of #MyalgicEncephalomyelitis #MECFS. If they did, I missed mention… 😡
#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder
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Not a recommendation because I have not tried it. However there is a subscription-service that apparently 80,000 folk with #ELCI s such as #pwME & #FMS use.
Here is the link: https://www.makevisible.com/
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May has been #InternationalMEAwarenessMonth #MEAwarenessMonth, but, alas, I have not been well enough to post nor share much this year. Here is a #poem from a decade ago. Matters have ameliorated slightly in that time, in that awareness has been raised and the issues are within the sights of politicos across the Globe due to #LongCovid.
#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder
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Couldn’t find #TheChronicCollaboration are on here, but this is an urgent letter - action prior to 30th April for a UK Parliamentary debate. If you are a #pwME or a carer or an ally, please consider signing the letter - and recall to send the email confirmation!
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder
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What are energy-limiting conditions? An introduction to chronic illness at work
http://www.catherinehale.net/2024/02/what-are-energy-limiting-conditions.html
#chronicillness #Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #ELCI #MEcfs #LongCovid @chronicillness
@spoonies
@longcovid @mecfs -
Just finished sorting through the last of the stuff removed from my bed-cell one year ago in order to deep-cleanse my room.
And thus a reminder it’s time to re-do! 😂
#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder
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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
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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 SupportThis 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
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Virtual Health. From last year. When you heard the Consultant can help and you need the letter, so you pay for their expertise. But it's another person passing your care back to you. Having barely survived the video consult.
#Telehealth #VirtualHealth #ChronicIllness #MECFS #pwME #ELCI
#Artist -
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;
conclusions.
Housemate looking for SW’s email. Then I can send if off! It has taken me four weeks to draft up…
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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.”
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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.”
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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”
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“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.”
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“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”
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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 manyNEW by
@HealthHubris
http://ow.ly/iNvL50LSRfS#ChronicIllness #ELCI #ME #CFS #welfareeform #LongCOVID @mecfs #mecfs #cfsme