#verysevereme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #verysevereme, aggregated by home.social.
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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 -
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." -
2/
“These results indicate that it may be beneficial for severely and very severely affected ME/CFS patients to be cared for in an environment where they are met with respect, understanding with the aim to reduce PEM as much as possible.” -
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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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 -
CW: Tod, ME/CFS
Gestern vor 5 Jahren, am 20.8.2019, starb Simon Ilka mit nur 26 Jahren.
2016, mit 23, erkrankte er an schwerstem #MECFS. Drei Jahre unvorstellbares Martyrium, unerträgliche Schmerzen, unendliches Leid.
Simon war einer der ersten in Deutschland publik gewordenen #VerySevereME & #MEkills Opfer. Sein Vater engagiert sich noch heute.
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The #NHSConstitution says that the #NHS is “available to all”. A denial of service because a #ReasonableAdjustment has not been made is in breach of it and #Disability legislation.
#DisabilityDiscrimination #DisabilityDeath
https://25megroup.org/wp-content/uploads/2024/07/Severe-ME-Awareness-Day-2024-Hospital-Care.pdf
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2/
ANZMES Releases Essential Resource for Healthcare Professionals to Manage Hospital Stays of Severe ME/CFS & #longCOVID Patients
If this is too hard to read, see link:
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PASC #SevereMECFS #VerySevereME @longcovid @mecfs #alt4ME
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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 -
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 -
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 -
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 -
New for #SevereMEDay2024
The following notes are a guide from the 25% ME Group for those who are/may be going to hospital with #SevereME or #VerySevereME
https://25megroup.org/wp-content/uploads/2024/07/Severe-ME-Awareness-Day-2024-Hospital-Care.pdf
#SevereMEDay
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
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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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 -
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 -
27/
May is M.E. Awareness Month. You can help by sharing and/or liking this 15-minute video on #SevereME & #VerySevereME: "Severe & Very Severe ME / CFS #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome" Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. the Assoc’s chair )
Discusses various distressing topics
http://www.dialogues-mecfs.co.uk/films/severeme/ #Day27
@mecfs #mecfs #pwme #cfs -
(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 -
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 -
#PEM & heat stroke no air con live on protein shakes
Everyone coughing no masks. They had party no food for me.
#Neglected and hungry.
Help me find #caregiver
#VerySevereMe #MECFS #LongCovid #Dysautonomia #Pwme
@mecfs @dysautonomia @disabilityjustice
@longcovid
@disability -
#PEM & heat stroke no air con live on protein shakes
Everyone coughing no masks. They had party no food for me.
#Neglected and hungry.
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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 -
4/4 #VerySevereME
“Very severe ME/CFS
People with very severe #MECFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.”
Link to #NICE website & #NG206
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations -
#PwME generally have one or more #Comorbidities: I personally have six of the ones listed at the bottom of the diagram (far too complex to write a summary thereof). I have #SevereME, a loss of the vast majority of pre-illness function. #MyalgicEncephalomyelitis kills those with #VerySevereME and I dread the ineluctable slide into said category…
