Have you been listening to our latest #ImaginePodcast season?
Launched for #SevereMEDay hear stories from those living with #SevereMECFS, their carers, clinicians, and advocates.
🎧 Available now on your favourite podcast platform
@MECFS_Clinic
#CountME #mecfs #longcovid
Launched for #SevereMEDay hear stories from those living with #SevereMECFS, their carers, clinicians, and advocates.
🎧 Available now on your favourite podcast platform
@MECFS_Clinic
#CountME #mecfs #longcovid
August 24, 2026 at 10:00 PM
Have you been listening to our latest #ImaginePodcast season?
Launched for #SevereMEDay hear stories from those living with #SevereMECFS, their carers, clinicians, and advocates.
🎧 Available now on your favourite podcast platform
@MECFS_Clinic
#CountME #mecfs #longcovid
Launched for #SevereMEDay hear stories from those living with #SevereMECFS, their carers, clinicians, and advocates.
🎧 Available now on your favourite podcast platform
@MECFS_Clinic
#CountME #mecfs #longcovid
Hier ein kleiner Rückblick unseres Infostandes am 8. August 2026 zum #severeMEday 💙🖤
Danke an Alle!
Wir ruhen uns jetzt ein bisschen aus und dann geht's weiter 🤗 wer mit Anpacken will, kann uns hier jederzeit eine Nachricht schreiben.
#mecfs
#oldenburg
#liegenddemo
Danke an Alle!
Wir ruhen uns jetzt ein bisschen aus und dann geht's weiter 🤗 wer mit Anpacken will, kann uns hier jederzeit eine Nachricht schreiben.
#mecfs
#oldenburg
#liegenddemo
August 17, 2026 at 2:33 PM
Hier ein kleiner Rückblick unseres Infostandes am 8. August 2026 zum #severeMEday 💙🖤
Danke an Alle!
Wir ruhen uns jetzt ein bisschen aus und dann geht's weiter 🤗 wer mit Anpacken will, kann uns hier jederzeit eine Nachricht schreiben.
#mecfs
#oldenburg
#liegenddemo
Danke an Alle!
Wir ruhen uns jetzt ein bisschen aus und dann geht's weiter 🤗 wer mit Anpacken will, kann uns hier jederzeit eine Nachricht schreiben.
#mecfs
#oldenburg
#liegenddemo
To mark #SevereMEDay 2026, the Dutch ME-info channel ME Centraal asked several national and international bloggers to contribute a piece in honor of the day.
Dutch blogger Anil van der Zee responded and offered them this poignant account of what might have been. We were permitted to publish his
Dutch blogger Anil van der Zee responded and offered them this poignant account of what might have been. We were permitted to publish his
Filmmaker Rolf Orthel: The price of independence, the burden of ME
To mark Severe ME Day 2026, the Dutch ME-info channel ME Centraal asked several national and international bloggers to contribute a piece in honor of the day. Dutch blogger Anil van der Zee respond…
meglobalchronicle.wordpress.com
August 15, 2026 at 3:54 AM
To mark #SevereMEDay 2026, the Dutch ME-info channel ME Centraal asked several national and international bloggers to contribute a piece in honor of the day.
Dutch blogger Anil van der Zee responded and offered them this poignant account of what might have been. We were permitted to publish his
Dutch blogger Anil van der Zee responded and offered them this poignant account of what might have been. We were permitted to publish his
The #MEAction Network Severe ME Artists Project has many wonderful pieces of art to share with you. Please share some love with the artists.
x.com/MEActNet/sta...
#SevereMEWeek2026
x.com/MEActNet/sta...
#SevereMEWeek2026
#MEAction Network on X
In honor of #SevereMEday, #MEAction is honored to share the Severe ME Artists Project 2026! Over 100 of you submitted photos, drawings, writing, and videos of your work! We are thrilled to share so many amazing and powerful pieces of artwork. https://t.co/B6w4pMvG7K #SevereME https://t.co/ZSRbXKArBX
x.com
August 11, 2026 at 10:23 AM
The #MEAction Network Severe ME Artists Project has many wonderful pieces of art to share with you. Please share some love with the artists.
x.com/MEActNet/sta...
#SevereMEWeek2026
x.com/MEActNet/sta...
#SevereMEWeek2026
The #MEAction Network Severe ME Artists Project has many wonderful pieces of art to share with you. Please share some love with the artists.
x.com/MEActNet/sta...
#SevereMEWeek2026
x.com/MEActNet/sta...
#SevereMEWeek2026
#MEAction Network on X
In honor of #SevereMEday, #MEAction is honored to share the Severe ME Artists Project 2026! Over 100 of you submitted photos, drawings, writing, and videos of your work! We are thrilled to share so many amazing and powerful pieces of artwork. https://t.co/B6w4pMvG7K #SevereME https://t.co/ZSRbXKArBX
x.com
August 11, 2026 at 10:23 AM
The #MEAction Network Severe ME Artists Project has many wonderful pieces of art to share with you. Please share some love with the artists.
x.com/MEActNet/sta...
#SevereMEWeek2026
x.com/MEActNet/sta...
#SevereMEWeek2026
That was my #SevereMEDay story.
You did not have to post the crowdfund, but ignoring the story is ignoring the sickest of the community you represent.
You did not have to post the crowdfund, but ignoring the story is ignoring the sickest of the community you represent.
August 11, 2026 at 5:19 AM
That was my #SevereMEDay story.
You did not have to post the crowdfund, but ignoring the story is ignoring the sickest of the community you represent.
You did not have to post the crowdfund, but ignoring the story is ignoring the sickest of the community you represent.
Btw I should have posted or at least reposted something over the weekend for #severeMEday. Honestly, it's a hard day to be online, but I didn't mean to let it go without acknowledgment.
August 10, 2026 at 2:33 PM
Btw I should have posted or at least reposted something over the weekend for #severeMEday. Honestly, it's a hard day to be online, but I didn't mean to let it go without acknowledgment.
It seems that, yet again, #SevereMEDay didn’t break the fourth wall, out from our ME bubble and into the big wide world of news. Despite many, many very ill people providing talented, passionate often heartbreaking content, it remained in the whirlpool of #pwME.
Next year 🤦♀️??
Next year 🤦♀️??
August 10, 2026 at 6:36 AM
It seems that, yet again, #SevereMEDay didn’t break the fourth wall, out from our ME bubble and into the big wide world of news. Despite many, many very ill people providing talented, passionate often heartbreaking content, it remained in the whirlpool of #pwME.
Next year 🤦♀️??
Next year 🤦♀️??
Nachtrag zum #SevereMEDAy
In SHG liest man alle paar Tage die gleichen Fragen zu Krankschreibung, Rehaaufforderungen, ALG im Nahtlosigkeitsverfahren, EMR ... .
Es kommen permanent neu Erkrankte hinzu, mit den gleichen behördlichen Hürden wie eh und je. Fortschritt: Fehlanzeige.
1/2
In SHG liest man alle paar Tage die gleichen Fragen zu Krankschreibung, Rehaaufforderungen, ALG im Nahtlosigkeitsverfahren, EMR ... .
Es kommen permanent neu Erkrankte hinzu, mit den gleichen behördlichen Hürden wie eh und je. Fortschritt: Fehlanzeige.
1/2
August 9, 2026 at 9:33 AM
Nachtrag zum #SevereMEDAy
In SHG liest man alle paar Tage die gleichen Fragen zu Krankschreibung, Rehaaufforderungen, ALG im Nahtlosigkeitsverfahren, EMR ... .
Es kommen permanent neu Erkrankte hinzu, mit den gleichen behördlichen Hürden wie eh und je. Fortschritt: Fehlanzeige.
1/2
In SHG liest man alle paar Tage die gleichen Fragen zu Krankschreibung, Rehaaufforderungen, ALG im Nahtlosigkeitsverfahren, EMR ... .
Es kommen permanent neu Erkrankte hinzu, mit den gleichen behördlichen Hürden wie eh und je. Fortschritt: Fehlanzeige.
1/2
August 9, 2026 at 8:52 AM
#SevereMEDay
#MEcfs
'Lo más desconcertante de todo esto es saber que, a pesar de todo lo que he perdido, sigo siendo la persona con el síndrome ME menos grave.
Aún puedo comer, ir al baño, bañarme de vez en cuando y hablar.
Pero con el síndrome de fatiga crónica, la amenaza siempre está presente"
#MEcfs
'Lo más desconcertante de todo esto es saber que, a pesar de todo lo que he perdido, sigo siendo la persona con el síndrome ME menos grave.
Aún puedo comer, ir al baño, bañarme de vez en cuando y hablar.
Pero con el síndrome de fatiga crónica, la amenaza siempre está presente"
The biggest mindfuck in all this is knowing that despite all I’ve lost I’m still the LEAST severe of those with #SevereME.
I can still eat, use the toilet, occasionally bathe and talk.
But with ME, the knife hovers.
There is always another piece to whittle away.
#SevereMEDay
5/X
I can still eat, use the toilet, occasionally bathe and talk.
But with ME, the knife hovers.
There is always another piece to whittle away.
#SevereMEDay
5/X
August 9, 2026 at 8:20 AM
#SevereMEDay
#MEcfs
'Lo más desconcertante de todo esto es saber que, a pesar de todo lo que he perdido, sigo siendo la persona con el síndrome ME menos grave.
Aún puedo comer, ir al baño, bañarme de vez en cuando y hablar.
Pero con el síndrome de fatiga crónica, la amenaza siempre está presente"
#MEcfs
'Lo más desconcertante de todo esto es saber que, a pesar de todo lo que he perdido, sigo siendo la persona con el síndrome ME menos grave.
Aún puedo comer, ir al baño, bañarme de vez en cuando y hablar.
Pero con el síndrome de fatiga crónica, la amenaza siempre está presente"
Mir geht's nicht gut.
Gestern #SevereMEDay.
Hab Angst, dass ich zu ehrlich war, wegen meinem Hilfsbedarf und wieder abgelehnt werde.
Sollte eigentlich Ende Woche Anruf bekommen wegen Alltagshilfe.
Vielleicht beratschlagen sie.
Heute Nachbarschaftshoftreffen.
Gestern #SevereMEDay.
Hab Angst, dass ich zu ehrlich war, wegen meinem Hilfsbedarf und wieder abgelehnt werde.
Sollte eigentlich Ende Woche Anruf bekommen wegen Alltagshilfe.
Vielleicht beratschlagen sie.
Heute Nachbarschaftshoftreffen.
August 9, 2026 at 7:50 AM
Mir geht's nicht gut.
Gestern #SevereMEDay.
Hab Angst, dass ich zu ehrlich war, wegen meinem Hilfsbedarf und wieder abgelehnt werde.
Sollte eigentlich Ende Woche Anruf bekommen wegen Alltagshilfe.
Vielleicht beratschlagen sie.
Heute Nachbarschaftshoftreffen.
Gestern #SevereMEDay.
Hab Angst, dass ich zu ehrlich war, wegen meinem Hilfsbedarf und wieder abgelehnt werde.
Sollte eigentlich Ende Woche Anruf bekommen wegen Alltagshilfe.
Vielleicht beratschlagen sie.
Heute Nachbarschaftshoftreffen.
"fühlen sich vergessen"
Journalismus zum #severeMEday auch konstant schlecht. Gibt ja kein Beitrag wo nicht auf irgend eine Art Gaslighting mit schwingt. 🙄
Journalismus zum #severeMEday auch konstant schlecht. Gibt ja kein Beitrag wo nicht auf irgend eine Art Gaslighting mit schwingt. 🙄
August 9, 2026 at 7:36 AM
"fühlen sich vergessen"
Journalismus zum #severeMEday auch konstant schlecht. Gibt ja kein Beitrag wo nicht auf irgend eine Art Gaslighting mit schwingt. 🙄
Journalismus zum #severeMEday auch konstant schlecht. Gibt ja kein Beitrag wo nicht auf irgend eine Art Gaslighting mit schwingt. 🙄
August 9, 2026 at 7:10 AM
The day after #SevereMEDay and I am wrecked from designing and posting and the Go Fund Me (link in bio). Eyes swollen and only half open, hair is getting matted again. It’s a 98% lying down day.
August 9, 2026 at 5:39 AM
The day after #SevereMEDay and I am wrecked from designing and posting and the Go Fund Me (link in bio). Eyes swollen and only half open, hair is getting matted again. It’s a 98% lying down day.
🧵 #SevereMEday. I found this poem particularly moving.
"Life I Dreamed"
By Rachael Ferrera
Sometimes it feels exhausting to be a human
So much weight
So much wait-ing
For the things we think we want
To come to be
www.meaction.net/_files/ugd/b...
"Life I Dreamed"
By Rachael Ferrera
Sometimes it feels exhausting to be a human
So much weight
So much wait-ing
For the things we think we want
To come to be
www.meaction.net/_files/ugd/b...
August 9, 2026 at 3:28 AM
🧵 #SevereMEday. I found this poem particularly moving.
"Life I Dreamed"
By Rachael Ferrera
Sometimes it feels exhausting to be a human
So much weight
So much wait-ing
For the things we think we want
To come to be
www.meaction.net/_files/ugd/b...
"Life I Dreamed"
By Rachael Ferrera
Sometimes it feels exhausting to be a human
So much weight
So much wait-ing
For the things we think we want
To come to be
www.meaction.net/_files/ugd/b...
The biggest mindfuck in all this is knowing that despite all I’ve lost I’m still the LEAST severe of those with #SevereME.
I can still eat, use the toilet, occasionally bathe and talk.
But with ME, the knife hovers.
There is always another piece to whittle away.
#SevereMEDay
5/X
I can still eat, use the toilet, occasionally bathe and talk.
But with ME, the knife hovers.
There is always another piece to whittle away.
#SevereMEDay
5/X
August 9, 2026 at 2:40 AM
The biggest mindfuck in all this is knowing that despite all I’ve lost I’m still the LEAST severe of those with #SevereME.
I can still eat, use the toilet, occasionally bathe and talk.
But with ME, the knife hovers.
There is always another piece to whittle away.
#SevereMEDay
5/X
I can still eat, use the toilet, occasionally bathe and talk.
But with ME, the knife hovers.
There is always another piece to whittle away.
#SevereMEDay
5/X
The vast majority of my life now lies in heaps of sawdust around my feet.
It makes me wonder if what I still hold could be called a life. At what point did I tip from living into surviving?
I suspect it was awhile ago.
4/
#SevereMEDay #SevereME
It makes me wonder if what I still hold could be called a life. At what point did I tip from living into surviving?
I suspect it was awhile ago.
4/
#SevereMEDay #SevereME
August 9, 2026 at 2:40 AM
The vast majority of my life now lies in heaps of sawdust around my feet.
It makes me wonder if what I still hold could be called a life. At what point did I tip from living into surviving?
I suspect it was awhile ago.
4/
#SevereMEDay #SevereME
It makes me wonder if what I still hold could be called a life. At what point did I tip from living into surviving?
I suspect it was awhile ago.
4/
#SevereMEDay #SevereME
Work was the first thing to be carved off.
Then volunteering.
Hobbies.
Driving.
Phone calls.
Sunlight.
Most of my parenting.
Everything given up in hope that I could keep my ME from getting worse.
3/
#SevereMEDay #SevereME
Then volunteering.
Hobbies.
Driving.
Phone calls.
Sunlight.
Most of my parenting.
Everything given up in hope that I could keep my ME from getting worse.
3/
#SevereMEDay #SevereME
August 9, 2026 at 2:40 AM
Work was the first thing to be carved off.
Then volunteering.
Hobbies.
Driving.
Phone calls.
Sunlight.
Most of my parenting.
Everything given up in hope that I could keep my ME from getting worse.
3/
#SevereMEDay #SevereME
Then volunteering.
Hobbies.
Driving.
Phone calls.
Sunlight.
Most of my parenting.
Everything given up in hope that I could keep my ME from getting worse.
3/
#SevereMEDay #SevereME
Myalgic Encephalomyelitis has a way of whittling away at your life.
7 years in and I can see littered around me the chips and shavings of my past life deemed “non-essential” to this new one.
2/
#SevereMEDay #SevereME
7 years in and I can see littered around me the chips and shavings of my past life deemed “non-essential” to this new one.
2/
#SevereMEDay #SevereME
August 9, 2026 at 2:40 AM
Myalgic Encephalomyelitis has a way of whittling away at your life.
7 years in and I can see littered around me the chips and shavings of my past life deemed “non-essential” to this new one.
2/
#SevereMEDay #SevereME
7 years in and I can see littered around me the chips and shavings of my past life deemed “non-essential” to this new one.
2/
#SevereMEDay #SevereME
Today is #SevereMEDay
I dropped from moderate to #SevereME 3 years ago.
It’s really hard to paint a picture of how bad this illness can get, but I’ll add pieces from my journal below.
1/
I dropped from moderate to #SevereME 3 years ago.
It’s really hard to paint a picture of how bad this illness can get, but I’ll add pieces from my journal below.
1/
#MECFS patients have a very low quality of life: lower than people with chronic renal failure, lower than heart failure, lower than any disease QOL to which it's been compared. So what is 'severe' ME?
While there are many definitions, here is one from Montoya et al. (2021). 🧵
#SevereMEDay 🧪
While there are many definitions, here is one from Montoya et al. (2021). 🧵
#SevereMEDay 🧪
August 9, 2026 at 2:40 AM
Today is #SevereMEDay
I dropped from moderate to #SevereME 3 years ago.
It’s really hard to paint a picture of how bad this illness can get, but I’ll add pieces from my journal below.
1/
I dropped from moderate to #SevereME 3 years ago.
It’s really hard to paint a picture of how bad this illness can get, but I’ll add pieces from my journal below.
1/
today is #SevereMEDay
a reminder that current laws in Australia for VAD are so incredibly exclusionary that most states leave it impossible for conditions such as severe myalgic encephalomyelitis.
the only way we ever pass is slowly starving until our heart gives out and we pass.
a reminder that current laws in Australia for VAD are so incredibly exclusionary that most states leave it impossible for conditions such as severe myalgic encephalomyelitis.
the only way we ever pass is slowly starving until our heart gives out and we pass.
Love story: Supporting your soulmate through voluntary assisted dying
Love story: Supporting your soulmate through voluntary assisted dying
Hilda Quiroga says she was "struck" by Steve Mayer from the moment they first met until his death at 53 through voluntary assisted dying.
www.abc.net.au
August 9, 2026 at 2:26 AM
today is #SevereMEDay
a reminder that current laws in Australia for VAD are so incredibly exclusionary that most states leave it impossible for conditions such as severe myalgic encephalomyelitis.
the only way we ever pass is slowly starving until our heart gives out and we pass.
a reminder that current laws in Australia for VAD are so incredibly exclusionary that most states leave it impossible for conditions such as severe myalgic encephalomyelitis.
the only way we ever pass is slowly starving until our heart gives out and we pass.
Today is Severe ME Day.
I wanted to post today about falling from moderate/severe ME into severe ME 4 1/2 years ago.
Yesterday, I sat in my wheelchair a little too long.
Today, I’m wrecked.
Severe ME is totally unforgiving.
(My daughter is writing this.)
I wanted to post today about falling from moderate/severe ME into severe ME 4 1/2 years ago.
Yesterday, I sat in my wheelchair a little too long.
Today, I’m wrecked.
Severe ME is totally unforgiving.
(My daughter is writing this.)
August 8, 2026 at 11:54 PM
I have mild #ME/CFS, 4 years after catching Covid. I can do limited excursions if I plan to rest in darkness the day after. All cooking is done by my husband, and I can’t drive.
I stand alongside my peers on #SevereMEDay, especially those who became worse because they needed help 💜
I stand alongside my peers on #SevereMEDay, especially those who became worse because they needed help 💜
On #SevereMEDay, I'm sharing Kornelia Paulsen's 'ME - How It Can Shrink One's World, Bit by Bit'
We need recognition of severe and very severe states of ME.
We need training for health workers, timely diagnosis, and provision of safe, specialist health care.
We need funding for research.
We need recognition of severe and very severe states of ME.
We need training for health workers, timely diagnosis, and provision of safe, specialist health care.
We need funding for research.
August 8, 2026 at 11:28 PM
I have mild #ME/CFS, 4 years after catching Covid. I can do limited excursions if I plan to rest in darkness the day after. All cooking is done by my husband, and I can’t drive.
I stand alongside my peers on #SevereMEDay, especially those who became worse because they needed help 💜
I stand alongside my peers on #SevereMEDay, especially those who became worse because they needed help 💜
Heute ist #severeMEday.
Meine Nichte leidet seit 2 Jahren an ME, seit ca. einem Jahr in schwerer Ausprägung.
Meist liegt sie im Bett,
Leben heißt für sie, sich über Nachrichten & Fotos zu freuen für deren Beantwortung sie zu schwach ist.
Bitte macht auf #ME/CFS aufmerksam.
Für sie & alle Erkrankten
Meine Nichte leidet seit 2 Jahren an ME, seit ca. einem Jahr in schwerer Ausprägung.
Meist liegt sie im Bett,
Leben heißt für sie, sich über Nachrichten & Fotos zu freuen für deren Beantwortung sie zu schwach ist.
Bitte macht auf #ME/CFS aufmerksam.
Für sie & alle Erkrankten
August 8, 2026 at 11:08 PM