#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:
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
#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
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
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
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
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
Colin-Roy Hunter
