Autonomy, dignity & independence
It's not a topic I'm that familiar with so I found it a bit abstract: I would have preferred more examples
Html:
https://www.emerge.org.au/autonomy-dignity-and-independence/
PDF:
https://emerge.org.au/wp-content/uploads/2023/04/autonomydignityandindependence-final.pdf
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@severeme
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #SevereME #severemecfs #severecfs #verysevereme
Austria:
"Artists severely affected by #MECFS have created an exhibition about their disease which is currently on display at Künstlerhaus in Vienna
Link that should translate webpage into whatever language you want:
https://www-kuenstlerhaus-at.translate.goog/besuch/kalender/ausstellung/445/crash.html?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #SevereME #SevereMECFS
#SevereCFS #VerySevereME
@severeme
#mecfs #MyalgicEncephalomyelitis #chronicfatiguesyndrome #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #SevereME #severemecfs #severecfs #verysevereme
From: @brokenbattery
New Video: Very Severe #MECFS is a debilitating condition causing profound suffering and life threatening symptoms. They are bedridden and dependent on care. Most doctors have had no training; leading to misdiagnosis, Inappropriate management and medical neglect.
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@severeme #SevereMEday #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME @mecfs
#mecfs #SevereME #severemecfs #severecfs #verysevereme #severemeday #MyalgicEncephalomyelitis #chronicfatiguesyndrome #cfs #pwme #myalgice #cfsme
"Caring for people with ME/CFS who are bedbound" (2023)
8-page fact sheet from
@EmergeAus
https://emerge.org.au/wp-content/uploads/2023/04/caringforpeoplewithmecfswhoarebedbound.pdf
#SevereME #SevereMECFS #SevereCFS #VerySevereME #MEcfs #CFS @mecfs @severeme
#severeme #severemecfs #severecfs #verysevereme #mecfs #cfs
One month ago to August 8, severe ME day.
I have a Pinterest board with 564 pins on severe ME/CFS here https://www.pinterest.ie/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos and articles.
You don't need to be on Pinterest.
#SevereME #SevereMECFS
#SevereCFS #VerySevereME @severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @mecfs
#SevereME #severemecfs #severecfs #verysevereme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme
5/
Good to see that the severely affected might need accommodations with regard to the physical examination
#SevereME #severemecfs #severecfs
Saturday, July 15 caregiver support call (for caregivers of people with me (mylagic encephalomeylitis), long covid and associated conditions)
https://www.meaction.net/event/me-caregiver-support-call/2023-07-15/
3:30 PM EDT/8:30 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.meaction.net/event/me-caregiver-support-call/2023-07-15/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #longhaulers #LongCovid #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid #postcovid19 @mecfs @longcovid #SevereME #SevereMECFS
#SevereCFS
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #LongHaulers #LongCovid #covidlonghaulers #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #severeme #severemecfs #severecfs
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 young UK woman with severe
ME
Day 18
#SevereME #SevereCFS
www.youtube.com/watch?v=cPH3kKkEYAI&feature=youtu.be
#myalgicencephalomyelitis #severeme #severecfs
"The Gurney Guide for Severe ME Transportation" by Galen Warden
https://www.galenwarden.com/post/gurney-guide
I haven't read this free guide. It looks like it focuses on the US with a little discussion on the UK & Australia
#SevereME #SevereMECFS
#SevereCFS #VerySevereME @severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #NeuroME #Bedbound
#SevereME #severemecfs #severecfs #verysevereme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #cfsme #cfids #seid #NeuroME #bedbound
ME Association:
Tiegan Greenwood – a very long day’s golf for an exceptionally good cause
At 4am on Saturday 17th June, Wayne – the father of an 18-year-old girl who has been unable to get out of bed for months because of her severe M.E. – will gather with friends at Hagley Golf Course just outside Stourbridge to play four complete rounds of the course by sundown.
#SevereME #SevereMECFS @SevereME #SevereCFS #VerySevereME #MEcfs #CFS #MyalgicE #PwME #MEeps #CFSME
#SevereME #severemecfs #severecfs #verysevereme #mecfs #cfs #myalgice #pwme #meeps #cfsme
(UK) Tube feeding questionnaire
A patient advocate who I respect plugged this, saying:
·Should not take more than 30 minutes, depending on your responses.
·Open for 2 months.
https://bournemouth.onlinesurveys.ac.uk/living-with-a-tube-at-home-final-to-go-live
A paper copy can be obtained from PINNT Charity https://pinnt.com/Home.aspx
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #NeuroME
#SevereME #severemecfs #severecfs #verysevereme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #cfsme #cfids #seid #NeuroME
Saturday, April 15 ME CAREGIVER SUPPORT CALL
https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/
3:30 PM EDT (US)/8:30 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #SevereME #SevereMECFS
#SevereCFS #VerySevereME @severeme @mecfs @cfs
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #meeps #severeme #severemecfs #severecfs #verysevereme
A lot of this is made up of useful extracts on what the NICE ME/CFS Guidelines says about Severe M.E/C.F.S
=======
(In UK)
ME Foggy Dog
This is an ongoing project (M.E Awareness Hour went very well last night!)
Please forward the guide to your politician (applies to devolved nations too) either tag them on social media or drop them an email.
https://youtu.be/G_KOdTrYyvQ
#MPDoYourJob4ME #pwME #MEcfs #SevereME @severeme #SevereMECFS
#SevereCFS #VerySevereME
#mpdoyourjob4me #pwme #mecfs #SevereME #severemecfs #severecfs #verysevereme
#SevereME
“They only see us on our better days and that might be once every three months but people judge you on that one meeting. Don’t see me on bad days when I don’t eat and try and make it to the toilet.” - Liam Pike, on Facebook
I don't have a direct link for this but it's taken from p34 InterAction 109 Christmas 2021 (magazine of AfME)
https://www.actionforme.org.uk/uploads/pdfs/InterAction%20issue%20111%20Autumn%202022.pdf
#SevereME #severemecfs #severecfs #pwme #mecfs #cfs
"Seeking people aged under 65 and living in residential aged care"
Learn more just starts an email to education@emerge.org.au rather than a link
#SevereME #SevereMECFS #SevereCFS #VerySevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @severeme
#australia #SevereME #severemecfs #severecfs #verysevereme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme
"A Shropshire couple, who provide devoted round-the-clock care for their bedridden 18-year-old daughter, have chosen to raise awareness of her condition through a fundraiser with The ME Association. Their daughter has a severe form of M.E. linked to #PosturalOrthostaticTachycardiaSyndrome (#PoTS)."
https://meassociation.org.uk/2023/03/tiegans-parents-join-our-hunt-for-treatments-and-a-cure
@severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #SevereME #SevereMECFS
#SevereCFS #VerySevereME
#PosturalOrthostaticTachycardiaSyndrome #pots #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #SevereME #severemecfs #severecfs #verysevereme
Slides for "How to ensure the Voice of the Severely affected ME/CFS patient is heard in research"
https://1drv.ms/p/s!Atxekzm7oyguiiXpGZ2wWvyd5VNG?e=vdo3mY
#MyalgicEncephalomyelitis #PwME #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE @mecfs @severeme #SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MyalgicEncephalomyelitis #pwme #chronicfatiguesyndrome #mecfs #cfs #myalgice #SevereME #severemecfs #severecfs #verysevereme
11/
“Many patients had chosen to say “no, thank you” to help in the home from local authorities. The nurses and other helpers who came to the patient’s home typically had no knowledge about ME/CFS, light and sound hypersensitivity, or how vulnerable the patients were”
@severeme @mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #SevereME #verysevereme #SevereCFS #SevereMECFS
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #SevereME #verysevereme #severecfs #severemecfs
8/
Trude Schei reports on the results of a rare survey that documented the situation people with #SevereME face in Norway
https://healthrising.org/blog/2023/03/13/severe-chronic-fatigue-syndrome-norway
Some extracts below
#MyalgicEncephalomyelitis #VerySevereME #ChronicFatigueSyndrome #MEcfs #CFS #SevereMECFS #SevereCFS #MEeps
@severeme @mecfs
#SevereME #MyalgicEncephalomyelitis #verysevereme #chronicfatiguesyndrome #mecfs #cfs #severemecfs #severecfs #meeps
From David Tuller
“To access my right to this welfare payment,” she wrote, “I am required to prove my life has been devastated, presenting it as a collection of medico-historical facts about all the things I can’t do, which reminds me of all the things I might have wanted to do and makes my existence sound abject and pitiful.”
https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @severeme
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #severeme #severemecfs #severecfs #verysevereme