#severemecfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #severemecfs, aggregated by home.social.
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ME Research UK:
A team of researchers have published a study investigating lived experiences of people with ME/CFS using data from posts made on social media.
Read more: https://tinyurl.com/mj2p8c24
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BBC Wales covers ME/CFS with text and radio pieces
https://www.bbc.com/news/articles/cpv8e71p3evo
https://www.youtube.com/watch?v=r1S2NMf8-uY
Screenshot from latest Science for ME weekly update
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(UK)
#ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare fundinghttps://www.thereforme.uk/p/why-is-continuing-healthcare-funding
Screenshot from latest Science for ME weekly update
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs -
Stonebird books on severe ME and caring now available to download for free
Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME -
A source for soundproofing material. From a report on a carers' group meeting.
Links:
https://www.audimute.com/?srsltid=AfmBOoroq-oztCCyDsWYuOfTj0brxVBYOTicWgLq0x0-AfSMtfxwM4Wahttps://www.amazon.com/stores/Audimute/page/A4D2379B-B4AD-4700-A085-096A2AF15C1F
COI: I have no financial or other interest in these companies
#SoundSensitivity #NoiseSensitivity #LongCovid #MEcfs #CFS #PwME #SevereME #SevereMECFS @longcovid @mecfs
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2/
Abstract for:
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue SyndromeFree fulltext:
https://www.sciencedirect.com/science/article/pii/S0277953625010974#SevereMECFS #SevereCFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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4/
"The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence." -
Telehealth as a Care Solution for Homebound People: Systematic Review and Meta-Analysis of Healthcare Utilization, Quality of Life, & Well-Being Outcomes
https://onlinelibrary.wiley.com/doi/full/10.1155/hsc/7224151
"telehealth emerges as a viable alternative to conventional care, significantly reducing healthcare utilization & enhancing both HRQOL and well-being for #homebound people"
#chronicillness #Spoonies #Spoonie #SevereME #SevereMECFS @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC -
Bitte geh' für uns zur Demo, denn wir sind selbst zu krank dafür.
Am kommenden Freitag, den 8.8.2025, ist #Aktionstag für die Betroffenen von besonders fies ausgeprägter myalgischer Enzephalomyelitis (#severeME).
15 Uhr in #Berlin, von der #Weltzeituhr am #Alexanderplatz zum Roten Rathaus
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18/
May is #MyalgicEncephalomyelitis (ME) Awareness Month.
You can help to raise awareness and understanding by retweeting and/or liking this 7 minute 8 second-video made on a young UK woman with severe ME
https://www.youtube.com/watch?v=cPH3kKkEYAIDay 18
#SevereME #SevereCFS #mecfs #severemecfs @severeme
@mecfs -
11/
#May12 is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Day
&
May is #MECFSawarenessmonth
Please help by reposting and/or liking this 12-minute documentary which features Whitney Dafoe & others
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A Quiet Storm: An online art gallery showcasing the artwork of people living with severe ME/CFS
@severeme
#SevereME #SevereMECFS
#SevereCFS
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
Bateman Horne Center:
We’re excited to share the Caregiving Resource Guide — a collection of practical tips from experts and caregivers who spoke at the Severe #MECFS Caregiving Webinar Series. Many suggestions can also empower those who don’t have a dedicated caregiver.
@severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
4/
“During the inquest into Maeve's death, the coroner Deborah Archer said it became clear to her that there were no specialist hospital or hospices, beds, wards or other health care provision in England for patients with severe ME”
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Dr Nigel Speight Talk on "ME/CFS in Children and Adults: An Overview" (2024)
YouTube link:
https://www.youtube.com/watch?v=Qi8uzGbHFpAIt would be great if more people could subscribe to our channel
#MyalgicEncephalomyelitis #SevereME #MEcfs #MyalgicE #PwME #TogetherWeAreStronger @mecfs @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME -
One week ago to August 8, #SEVEREMEDAY
I have a Pinterest board with 616 pins on #severeMECFS here https://pinterest.ie/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos & articles
You don't need to be on Pinterest
@severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #PwME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
4/
Extract from the 2021 NICE guideline [NG206] ME/CFS: diagnosis and management quoted in "Supporting people with ME/CFS in hospital"
https://meassociation.org.uk/wp-content/uploads/Supporting-people-with-MECFS-in-hospital-31.05.24.pdf#SevereME #SevereMECFS #SevereCFS #VerySevereME
@mecfs @severeme -
Severe ME Artists Project 2024
Links in image:
https://www.meaction.net/
https://www.meaction.net/2024/06/26/severe-me-artists-project-2024/ (x2)From the Massachusetts ME/CFS & FM Association July e-newsletter
https://massmecfs.org/component/civicrm/?task=civicrm/mailing/view&id=1393&reset=1@severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
New pre-print:
Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206https://www.qeios.com/read/T9SXEU
Great to have a respected consultant physician writing on this topic
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @mecfs @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME -
Severe ME in Denmark
Summary of a recent qualitative study
https://www.meresearch.org.uk/severe-me-in-denmark/
@severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
Here is Dr Nigel Speight's 2020 paper on #severeME in children
https://mdpi.com/2227-9032/9/11/1546He touched on the topics of children and Severe ME during his recent series of talks in Ireland we organised
@severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs -
New:
The most severely ill patients with ME/CFS in DenmarkFree full text:
https://www.tandfonline.com/doi/full/10.1080/27707571.2024.2359958Looks like a sympathetic exploration of an important but neglected topic
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#SevereME #SevereMECFS #SevereCFS @mecfs @severeme -
CAREGIVER SUPPORT CALL ( for caregivers of people with ME
( #MyalgicEncephalomyelitis ), #LongCOVID and associated conditions)https://www.meaction.net/event/me-caregiver-support-call/2024-06-15/
3:30 PM EDT/8:30 PM in Great Britain & Ireland
Find the time in your time zone:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=June+15+CAREGIVER+SUPPORT+CALL&iso=20240615T1530&p1=179&ah=1@mecfs
#ChronicFatigueSyndrome #MEcfs #CFS #PwME @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC -
(From the bird site)
ME nieuws @mecvsnieuws
#MEawarenessday video: The ME you don't see
Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.
Watch full video here: https://youtu.be/DJGk-2G3yE4 (NL+ENG subs)
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME -
11/
#May12 is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Day
&
May is #MECFSawarenessmonth
Please help by reposting and/or liking this 12-minute documentary which features Whitney Dafoe & others
https://www.youtube.com/watch?v=9_HwOUiImvw
#PwME #SevereME #SevereMECFS
#mecfs #VerySevereME
@mecfs @severeme -
Thank you very much to Lee Colligan for undertaking this marathon walk as he honours his late brother Josh Colligan and raises money and awareness for M.E. 👍👏
His donation page is here https://www.idonate.ie/fundraiser/LeeColligan if anyone wants to support him & us
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @severeme
#SevereME #SevereMECFS
#SevereCFS -
Saturday April 20
CAREGIVER SUPPORT CALL ( for caregivers of people with ME (#MyalgicEncephalomyelitis ), #LongCOVID and associated conditions)https://www.meaction.net/event/me-caregiver-support-call/2024-04-20/
3:30 PM EDT/8:30 PM in GB & Ireland
Find the time in your time zone here
https://www.timeanddate.com/worldclock/fixedtime.html?msg=April+20+CAREGIVER+SUPPORT+CALL+&iso=20240420T1530&p1=2416&ah=1#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #PASC -
2/
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.
from:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full#MEcfs #CFS #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @mecfs -
CW: Distressing case involving severe ME
'I can't walk, talk or eat - doctors don't believe what's wrong with me and I think I'm going to die'
Millie McAinsh says she's 'constantly hurting' and claims doctors 'won't listen' to her wishes.
https://www.mirror.co.uk/news/health/severe-killing-me-doctors-wont-32491644
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @severeme
#SevereME #SevereMECFS
#SevereCFS -
Byline Times: 'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients
The heartbreaking & currently ongoing critical case of #severeME sufferer Millie McAnish
#SevereMEcfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME @severeme #severecfs1/
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11/
#May12 is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Day
&
May is #MECFSawarenessmonth
Please help by retooting this 12-minute documentary which features Whitney Dafoe & others
https://youtube.com/watch?v=9_HwOUiImvw#PwME @mecfs @cfs #SevereME #SevereMECFS
#SevereCFS #VerySevereME @SevereME