@tomkindlon @mecfs I am finding it increasingly difficult to want to stay. I know I donæ have #VerySevereME, but #SevereME for the past decade is draining my life-force… I am saving this as a boost to my psyche… 🙏🏻

Denmark: magazine Se&Hør has a series of articles about ME incl. on #severeME.

They also write about how ME has been wrongfully categorised as a "functional disorder", leading to harmful treatments. These articles have resulted in the Danish health authorities being asked to explain why ME patients are being treated this way, with frustrating responses

Translation:
https://shorturl.at/fDW04
https://shorturl.at/abtw8

@mecfs
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #PwME

‼️➡️Please help me find a #GP or any #doctor willing to prescribe #fentanyl patches within the next 20 days in #Melbourne #Australia

Refused meds by GP who promised to prescribe until I found a new GP (he dropped me because my case is too complex). Changed his mind! Now have 20 days to find any doctor to write a script or #withdrawal agony for me & no pain control.

Time running out fast.😩

#ChronicPain
@chronicpain
@mecfs
#SevereME #Medicine
#MECFS #MedMastodon
@chronicillness
@longcovid

This is a #Fitbit read-out for whilst I was looking up refs. I did not leave my bed nor do any exercise. I was just using a tablet, checking data & then transferring to a spreadsheet.

In c.8 hrs (only the first 4 hrs was actually doing, the rest was recovery-time) I burned some 1,300 Cals. C.f. to the gym, “The number of calories burned in a one-hour weight training ranges from 180 to 266 calories in a one-hour session.”

#MentalActivity for those of us with #SevereME is extremely taxing. #pwME

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

Just changed profile: now 29 years housebound with #severeME (more than half my life) (ill 34.5 years)☹️

We need more public & private money to make research progress soon, the quicker the better: my life & the lives of millions of others are passing by.

Here's a list of ME/CFS research funds:

http://phoenixrising.me/resources-2/research-charities

Here's my story as told in the Irish Independent in 2015:

https://www.independent.ie/life/health-wellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/34153140.html

@mecfs #MyalgicEncephalomyelitis #MEcfs #CFS #PwME #MyalgicE #ChronicFatigueSyndrome #MEeps

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

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #SevereME #SevereMECFS
#SevereCFS #VerySevereME
@severeme

Are there any #GPs in #Melbourne #Australia who:
A) Like complex patients?
B) Are still taking on complex patients? All I‘ve tried are full.

I’ve tried asking everywhere. Hundreds. I’m so tired. 😩

#MedMastodon
#ChronicIllness
#SevereME #PwME #MECFS
#LongCovid #POTS #Hypothyroidism

@medmastodon
@chronicillness
@mecfs
@longcovid
@chronicpain

“I've had ME for 16 years, & #severeME for 14 years after #GradedExerciseTherapy (GET), & being told the harmful advice to push myself left me much worse, severe, housebound & bed-bound half the day. In all the years since, I've never recovered from it” 😢😡

“the hardest symptoms to explain to people are how even mental stimuli can be exhausting & overwhelming - Light, sound, touch, motion, watching things or people move around”

https://meassociation.org.uk/rnpf
@mecfs #mecfs #pwme #cfs

Interview with Anil van der Zee for severe M.E. Awareness Day 2023

An insightful interview with severe ME sufferer, professional dancer and forum member Anil van der Zee from his bed. He talks about his day-to-day life and raises the needs of severe ME sufferers. Duration: 32 minutes. English subtitles.

https://youtu.be/cInSsoxM0Zg

#severeme @mecfs #mecfs #cfs #pwme #pwmes #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

#SevereME #pwME #MyalgicE #VerySevereME @mecfs

More info from MEAction:

"Severe ME Day is a day of remembrance when we think of those whom we have lost to myalgic encephalomyelitis (ME), and focus on those living with severe ME. For those of you in our community who have severe ME, we love you and we are fighting with you.

August 8th was chosen to honor Sophia Mirza, a severe ME patient who died of the disease. Severe ME Awareness Day was started by the 25 Percent ME Group in 2013"

https://25megroup.org/

#MEcfs #PwME #SevereME

@mecfs

From #MEAction for Severe ME Day:

"Severe ME Artist Project 2023 — Gallery"

"The Severe ME Artist Project 2023 features work from those within the severe ME community and is in recognition of Severe ME Day on August 8th.

We had over 150 submissions, and we are blown away by this response – thank you!"

https://www.meaction.net/2023/07/31/severe-me-artist-project-2023-gallery/

#MEcfs #PwME #SevereME #SevereMEday #Art #Video #Writing

@mecfs

Today, August 8, is Severe ME Awareness Day.

Broken Battery has a new video describing Severe ME:

https://www.youtube.com/watch?v=J9fQDXzLTNY

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #MyalgicE #SevereME

@mecfs

#MEAction Network

We are honored to share the Severe ME Artist Project 2023 in honor of #SevereMEDay. Thank you to all who submitted their work for this project and holding space for all who could not participate.

Gallery & Video: https://meaction.net/2023/07/31/severe-me-artist-project-2023-gallery/

#SevereME @severeme #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs

8. august er Alvorleg ME-Dagen, eller Severe ME Day. Eg markerar dette med eit sjølvskrive dikt.

1/?

#pwME #SevereMEDay #SevereME

Free Severe ME mini-course from Learna / Study PRN (authored by Dr Muirhead)

Link:
https://docs.google.com/forms/d/e/1FAIpQLSeaxO7NxelbWZWpNy4K38__kgSeJT3ZQNAjyvfcGbojyVxJUA/viewform

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #MyalgicE #SevereME #SevereMEday

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

On #SevereMEday (August 8), I remember my friend Ruth Nolan from Glasnevin, Dublin, Ireland who has spent 3 decades bedbound with #SevereME

For 14+ yrs she has had #VerySevereME : she's only able to have a few very short conversations & very little cognitive/mental stimulation☹️

#MEcfs #PwME #SevereME #CFS @mecfs#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @severeme

2/

25% ME Group webpage for
Severe M.E Day - 8th of August 2023

https://25megroup.org/severe-me-day-2023/

This Year’s Focus:
Malnutrition in severe and very severe ME

#severeme #severemeday #pwme #mecfs
@MalnutritionME
@severeme @mecfs