#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:
2/
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
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
“Nidos Lingüísticos”, iniciativa para niños y niñas busca fortalecer la identidad cultural mapuche en la zona central | vía #UChileRadio
#almacu #conadi #cultura #educadoras #elci #mapuche #mapudungun #salascuna
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
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
The COVID-19 pandemic has transformed our understanding of healthcare challenges, with long COVID emerging as a significant current and ongoing public health issue.1 For governments across the four UK nations, this presents both a challenge and an opportunity to build a National Health Service (NHS) that truly responds to the needs of all its patients, particularly, those with long COVID and myalgic encephalomyelitis (ME). A recent policy brief draws on the results of an online survey carried out in June–July 2024, which asked patients with long COVID and ME to evaluate parts of Labour’s mission plan for the NHS against their experiences of care.2 The report uses data from over 300 responses from patients and carers to identify the issues being faced. It also highlights challenges for the new Labour government in the UK to take clear steps to ensure the NHS provides for the needs of people living with long COVID and ME. While the brief focuses on the UK, there are lessons for governments across the world. The policy brief is part of #ThereForME, a patient-led and carer-led campaign, supported by 18 organisations and smaller initiatives, calling for an NHS that is there for people with long COVID and ME. In August the campaign shared the policy brief’s findings with the UK Secretary of State for Health and Social Care, through an open letter signed by over 2600 patients and …
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
New US research:
Defining fatigue from the experiences of patients living with chronic fatigue
https://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
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
Colin-Roy Hunter
Tom Kindlon
Noticias Ind. Chile
