#MEAwarnessHour + Nachtrag zum #SevereMEDay: Schwer & schwerst an #MECFS Erkrankte wären oft vermeidbar

🔸 Essentiell: Aufklärung & Medizinische Grundversorgung

🔸 Nur #Müdigkeit? #Erschöpfung?
ME/CFS = schwere Multisystemkrankheit. Kernsymptom: Belastungsintoleranz und PEM (Post-exertionale Malaise).

🔸 Wissenslücken existieren trotz Pandemie. Einige Fachleute leugnen sie.

🔸Was tun?

1. ANERKENNEN der Krankheit
2. LINDERN der Symptome
3. VERHINDERN falscher Ratschläge

https://www.linkedin.com/posts/drkelleherfurth_meawarnesshour-severemeday-belastungsintoleranz-activity-7095126970497146880-8BJp?utm_source=share&utm_medium=member_ios

💙It’s #SevereMEAwarenessDay
Please considering giving mutual aid to help me survive while being bedbound from severe ME. My partner and I are barely making ends meet even after skipping meals and rationing medication.
My recent trips to the hospital has left me in an even worse state and we need support now more than ever
Please also check out the link in the comment for wshlist for items we need to help, as well as ways to contribute to our survival fund🔽

#SevereMEDay #MutualAid #severemecfs

Today is #severeMEday.

Caregivers provide essential support to people with severe ME

Next support group meeting:
Caregiver Support Call (for caregivers of people with ME (myalgic encephalomeylitis), #LongCovid and Associated Conditions)

Saturday, August 19
https://www.meaction.net/event/me-caregiver-support-call/2023-08-19/

3:30 PM ET/8:30 PM in Great Britain & Ireland

Find the time in your time zone here
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Saturday%2C+August+19+CAREGIVER+SUPPORT+CALL+%28+FOR+CAREGIVERS+OF+PEOPLE+WITH+ME+&iso=20230819T1530&p1=179&ah=1

@longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @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 is #SevereMEDay - Severe ME Awareness Day

I have ME (myalgic encephalomyelitis) although my personal case is moderate… today is a bed bound day.

My heart goes out to those who live day in and day out with a more severe form of this illness than I have. I realize my privilege, even if from my perspective it feels like I’ve lost 70% of my life living with this illness.

I share because awareness matters.
Doctors dismiss us, mistreat us, cause harm.
We need your solidarity.
#pwME

Vandaag is het #SevereMEDay

Weckruf zum 8. August: Der #SevereMEDay zeigt die stille Katastrophe von #MECFS.

Ein Viertel der Betroffenen ist schwer oder schwerst betroffen, ein Großteil unversorgt, sozial isoliert zu Hause oder bettlägerig, abgeschnitten von der Außenwelt und jeder Form eines „normalen“ Lebens.

Trotz der Zunahme durch #COVID19 fehlt es an Aufklärung und Forschung. Es ist mehr als eine medizinische Herausforderung.

https://www.linkedin.com/posts/drkelleherfurth_severemeday-mecfs-millionsmissing-activity-7094689673976963072-O1wQ?utm_source=share&utm_medium=member_ios

#Millionsmissing #LostVoicesStiftung #pwME #LongCOVID #PostCOVID

#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

Tach-quak! Heute ist Dienstag, der 8. August 2023. KW 32.
Today is Setting Orange, the 1st day of Bureaucracy in the YOLD 3189.

Am 8. August 2013: Der #SevereMEday wird zum ersten Mal von der „25 Percent ME Group“ ausgerufen. Der Tag wurde gewählt zu Ehren von Sophia Mirza, die an diesem Tag aufgrund dieser bislang unheilbaren Erkrankung gestorben war. – https://me-pedia.org/wiki/Severe_ME_Awareness_Day

#SevereMEDay

Gestern zwei #MEkills Todesmeldungen.
Zwei zu viel.
Viel zu früh.
Zu viele, die bereits gehen mussten.

Wo ist die Forschung, wo?
Wo ist die Hilfe, wo?
Wo ist die Versorgung,wo?

#MEcfs

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

ℹ️ Informationsmaterial
#SevereMEDay
Dieser #MyalgicE-Flyer erklärt die typischen ME-Symptome, Schweregrad und die Probleme sowie Fallbeispiel Merryn Crofts.

Es ist sehr wichtig, über diese verheerende Krankheit aufzuklären.

Flyer kostenlos bei mir (kontakt[]me-aktuell[]de) anfordern.

#MEcfs