#severeme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #severeme, aggregated by home.social.
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Wie es sich anfühlt mit schwerem ME/CFS nicht mehr kommunizieren zu können:
„Mein Schmerz drang von innen gegen meine Haut, es gab keine Möglichkeit ihn nach außen zu tragen.
Ich wünschte du würdest mir unter die Haut kriechen und alles mit mir spüren. Nur für einen Moment. Dann kämst du wieder heraus und würdest sagen: dein Schmerz ist echt, ich habe ihn gesehen.“
- Alice im Nachtmeer
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Wie es sich anfühlt mit schwerem ME/CFS nicht mehr kommunizieren zu können:
„Mein Schmerz drang von innen gegen meine Haut, es gab keine Möglichkeit ihn nach außen zu tragen.
Ich wünschte du würdest mir unter die Haut kriechen und alles mit mir spüren. Nur für einen Moment. Dann kämst du wieder heraus und würdest sagen: dein Schmerz ist echt, ich habe ihn gesehen.“
- Alice im Nachtmeer
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Wie es sich anfühlt mit schwerem ME/CFS nicht mehr kommunizieren zu können:
„Mein Schmerz drang von innen gegen meine Haut, es gab keine Möglichkeit ihn nach außen zu tragen.
Ich wünschte du würdest mir unter die Haut kriechen und alles mit mir spüren. Nur für einen Moment. Dann kämst du wieder heraus und würdest sagen: dein Schmerz ist echt, ich habe ihn gesehen.“
- Alice im Nachtmeer
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Wie es sich anfühlt mit schwerem ME/CFS nicht mehr kommunizieren zu können:
„Mein Schmerz drang von innen gegen meine Haut, es gab keine Möglichkeit ihn nach außen zu tragen.
Ich wünschte du würdest mir unter die Haut kriechen und alles mit mir spüren. Nur für einen Moment. Dann kämst du wieder heraus und würdest sagen: dein Schmerz ist echt, ich habe ihn gesehen.“
- Alice im Nachtmeer
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Wie es sich anfühlt mit schwerem ME/CFS nicht mehr kommunizieren zu können:
„Mein Schmerz drang von innen gegen meine Haut, es gab keine Möglichkeit ihn nach außen zu tragen.
Ich wünschte du würdest mir unter die Haut kriechen und alles mit mir spüren. Nur für einen Moment. Dann kämst du wieder heraus und würdest sagen: dein Schmerz ist echt, ich habe ihn gesehen.“
- Alice im Nachtmeer
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“The more ill you become, the less care you receive” - Severe ME Inquiry Report
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“The more ill you become, the less care you receive” - Severe ME Inquiry Report
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“The more ill you become, the less care you receive” - Severe ME Inquiry Report
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“The more ill you become, the less care you receive” - Severe ME Inquiry Report
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“The more ill you become, the less care you receive” - Severe ME Inquiry Report
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Beautiful writing from Naomi Whittingham's blog, A Life Hidden:
"The Burden of Chronic Illness That I Rarely Talk About"
https://alifehidden.com/2026/07/30/burden/#
"Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear"
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Beautiful writing from Naomi Whittingham's blog, A Life Hidden:
"The Burden of Chronic Illness That I Rarely Talk About"
https://alifehidden.com/2026/07/30/burden/#
"Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear"
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Beautiful writing from Naomi Whittingham's blog, A Life Hidden:
"The Burden of Chronic Illness That I Rarely Talk About"
https://alifehidden.com/2026/07/30/burden/#
"Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear"
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Beautiful writing from Naomi Whittingham's blog, A Life Hidden:
"The Burden of Chronic Illness That I Rarely Talk About"
https://alifehidden.com/2026/07/30/burden/#
"Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear"
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Beautiful writing from Naomi Whittingham's blog, A Life Hidden:
"The Burden of Chronic Illness That I Rarely Talk About"
https://alifehidden.com/2026/07/30/burden/#
"Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear"
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ME Research UK:
Today is dedicated to raising awareness about #SevereME & remembrance of those who have lost their lives to this debilitating condition, such as Sophia Mirza – a British artist. Her birthday – 8th August – was chosen to mark Severe ME Day.Read more: https://tinyurl.com/severemeday2026
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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ME Research UK:
Today is dedicated to raising awareness about #SevereME & remembrance of those who have lost their lives to this debilitating condition, such as Sophia Mirza – a British artist. Her birthday – 8th August – was chosen to mark Severe ME Day.Read more: https://tinyurl.com/severemeday2026
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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ME Research UK:
Today is dedicated to raising awareness about #SevereME & remembrance of those who have lost their lives to this debilitating condition, such as Sophia Mirza – a British artist. Her birthday – 8th August – was chosen to mark Severe ME Day.Read more: https://tinyurl.com/severemeday2026
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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ME Research UK:
Today is dedicated to raising awareness about #SevereME & remembrance of those who have lost their lives to this debilitating condition, such as Sophia Mirza – a British artist. Her birthday – 8th August – was chosen to mark Severe ME Day.Read more: https://tinyurl.com/severemeday2026
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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ME Research UK:
Today is dedicated to raising awareness about #SevereME & remembrance of those who have lost their lives to this debilitating condition, such as Sophia Mirza – a British artist. Her birthday – 8th August – was chosen to mark Severe ME Day.Read more: https://tinyurl.com/severemeday2026
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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From #MEAction for Severe ME Day (Aug. 8)
"Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026"
https://www.meaction.net/post/honoring-severe-me-day-sharing-our-severe-me-artists-project-2026
"#MEAction is proud to share the Severe ME Artists Project 2026!
... over 100 of you submitted photos, drawings, writing, and videos of your work! We debuted this project in 2021 and five years later we continue to be humbled and honored to bring you the work of the Severe ME community"
1/3
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From #MEAction for Severe ME Day (Aug. 8)
"Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026"
https://www.meaction.net/post/honoring-severe-me-day-sharing-our-severe-me-artists-project-2026
"#MEAction is proud to share the Severe ME Artists Project 2026!
... over 100 of you submitted photos, drawings, writing, and videos of your work! We debuted this project in 2021 and five years later we continue to be humbled and honored to bring you the work of the Severe ME community"
1/3
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From #MEAction for Severe ME Day (Aug. 8)
"Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026"
https://www.meaction.net/post/honoring-severe-me-day-sharing-our-severe-me-artists-project-2026
"#MEAction is proud to share the Severe ME Artists Project 2026!
... over 100 of you submitted photos, drawings, writing, and videos of your work! We debuted this project in 2021 and five years later we continue to be humbled and honored to bring you the work of the Severe ME community"
1/3
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From #MEAction for Severe ME Day (Aug. 8)
"Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026"
https://www.meaction.net/post/honoring-severe-me-day-sharing-our-severe-me-artists-project-2026
"#MEAction is proud to share the Severe ME Artists Project 2026!
... over 100 of you submitted photos, drawings, writing, and videos of your work! We debuted this project in 2021 and five years later we continue to be humbled and honored to bring you the work of the Severe ME community"
1/3
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From #MEAction for Severe ME Day (Aug. 8)
"Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026"
https://www.meaction.net/post/honoring-severe-me-day-sharing-our-severe-me-artists-project-2026
"#MEAction is proud to share the Severe ME Artists Project 2026!
... over 100 of you submitted photos, drawings, writing, and videos of your work! We debuted this project in 2021 and five years later we continue to be humbled and honored to bring you the work of the Severe ME community"
1/3
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Today is #SevereME Day. I am not currently well enough to compose my own thread, so I am sharing this one about what it’s like to have severe Myalgic Encephalomyelitis.
RE: https://bsky.app/profile/did:plc:fxzd5277so73zk3uxvlpzrg6/post/3kz7pcn3jga2u -
Today is #SevereME Day. I am not currently well enough to compose my own thread, so I am sharing this one about what it’s like to have severe Myalgic Encephalomyelitis.
RE: https://bsky.app/profile/did:plc:fxzd5277so73zk3uxvlpzrg6/post/3kz7pcn3jga2u -
Today is #SevereME Day. I am not currently well enough to compose my own thread, so I am sharing this one about what it’s like to have severe Myalgic Encephalomyelitis.
RE: https://bsky.app/profile/did:plc:fxzd5277so73zk3uxvlpzrg6/post/3kz7pcn3jga2u -
Today is #SevereME Day. I am not currently well enough to compose my own thread, so I am sharing this one about what it’s like to have severe Myalgic Encephalomyelitis.
RE: https://bsky.app/profile/did:plc:fxzd5277so73zk3uxvlpzrg6/post/3kz7pcn3jga2u -
Today is Severe ME Awareness Day. As many folks here know, my girlfriend has severe ME resulting from Long COVID.
I can only experience it from the outside. But what I know is that It is not simply “being really tired.”
It is debilitating. It is incredibly painful. It is hell.
It is often not believed.
But it is real. And those who have it deserve all our love, support, and advocacy.
https://www.sheffieldmegroup.co.uk/post/severe-me-awareness-day-8-august-2026
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Today is Severe ME Awareness Day. As many folks here know, my girlfriend has severe ME resulting from Long COVID.
I can only experience it from the outside. But what I know is that It is not simply “being really tired.”
It is debilitating. It is incredibly painful. It is hell.
It is often not believed.
But it is real. And those who have it deserve all our love, support, and advocacy.
https://www.sheffieldmegroup.co.uk/post/severe-me-awareness-day-8-august-2026
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Today is Severe ME Awareness Day. As many folks here know, my girlfriend has severe ME resulting from Long COVID.
I can only experience it from the outside. But what I know is that It is not simply “being really tired.”
It is debilitating. It is incredibly painful. It is hell.
It is often not believed.
But it is real. And those who have it deserve all our love, support, and advocacy.
https://www.sheffieldmegroup.co.uk/post/severe-me-awareness-day-8-august-2026
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Today is Severe ME Awareness Day. As many folks here know, my girlfriend has severe ME resulting from Long COVID.
I can only experience it from the outside. But what I know is that It is not simply “being really tired.”
It is debilitating. It is incredibly painful. It is hell.
It is often not believed.
But it is real. And those who have it deserve all our love, support, and advocacy.
https://www.sheffieldmegroup.co.uk/post/severe-me-awareness-day-8-august-2026
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View from the Trenches of #MyalgicEncephalomyelitis latest article covers #SevereME day for 2026.
Includes news and resources.
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View from the Trenches of #MyalgicEncephalomyelitis latest article covers #SevereME day for 2026.
Includes news and resources.
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View from the Trenches of #MyalgicEncephalomyelitis latest article covers #SevereME day for 2026.
Includes news and resources.
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Today is Severe ME Day (August 8)
Here's a video posted by Solve ME last year:
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing."
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Today is Severe ME Day (August 8)
Here's a video posted by Solve ME last year:
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing."
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Today is Severe ME Day (August 8)
Here's a video posted by Solve ME last year:
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing."
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Today is Severe ME Day (August 8)
Here's a video posted by Solve ME last year:
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing."
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Today is Severe ME Day (August 8)
Here's a video posted by Solve ME last year:
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing."
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Severe ME Awareness Day
#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs -
CW: Spende / Severe ME
Anlässlich des heutigen ME Awareness Day könntet ihr ja, sofern ihr könnt, was an Daryna spenden, die unter schwerstem ME leidet und weiterhin finanzielle Hilfe gebrauchen könnte.
Geht auch via Paypal: https://www.paypal.com/paypalme/JBuckley485
https://gogetfunding.com/help-daryna-survive-in-berlin-for-the-next-6-months/?lang=de
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CW: Spende / Severe ME
Anlässlich des heutigen ME Awareness Day könntet ihr ja, sofern ihr könnt, was an Darya spenden, die unter schwerstem ME leidet und weiterhin finanzielle Hilfe gebrauchen könnte.
Geht auch via Paypal: https://www.paypal.com/paypalme/JBuckley485
https://gogetfunding.com/help-daryna-survive-in-berlin-for-the-next-6-months/
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CW: Spende / Severe ME
Anlässlich des heutigen ME Awareness Day könntet ihr ja, sofern ihr könnt, was an Daryna spenden, die unter schwerstem ME leidet und weiterhin finanzielle Hilfe gebrauchen könnte.
Geht auch via Paypal: https://www.paypal.com/paypalme/JBuckley485
https://gogetfunding.com/help-daryna-survive-in-berlin-for-the-next-6-months/?lang=de
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CW: Spende / Severe ME
Anlässlich des heutigen ME Awareness Day könntet ihr ja, sofern ihr könnt, was an Daryna spenden, die unter schwerstem ME leidet und weiterhin finanzielle Hilfe gebrauchen könnte.
Geht auch via Paypal: https://www.paypal.com/paypalme/JBuckley485
https://gogetfunding.com/help-daryna-survive-in-berlin-for-the-next-6-months/?lang=de