dSavannah
@dsavannah.bsky.social
~ Life stolen by MEcfs-hEDS-fibro-POTS-&c; FT sick since 12/2014
~ #LiveInBedButIAintDead
~ When brain & body behave: Chronic Illness Advocate
~ Discworldian, Browncoat
~🐱(x3)🐢💐🌻🌷📸📚🖼️
~ she / her ~ Love Is Love ❤️💚🧡💛🩵💙💜🤎🖤🩶🤍🩷
https://linktr.ee/thedsavannah
~ #LiveInBedButIAintDead
~ When brain & body behave: Chronic Illness Advocate
~ Discworldian, Browncoat
~🐱(x3)🐢💐🌻🌷📸📚🖼️
~ she / her ~ Love Is Love ❤️💚🧡💛🩵💙💜🤎🖤🩶🤍🩷
https://linktr.ee/thedsavannah
Reposted by dSavannah
It's Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) day of awareness.
For the last 8 years, my wife has been bedbound. She can't bathe, can't watch TV, can't get herself to the bathroom, often can't speak.
There are MILLIONS of people with her condition—but you never hear about it.
For the last 8 years, my wife has been bedbound. She can't bathe, can't watch TV, can't get herself to the bathroom, often can't speak.
There are MILLIONS of people with her condition—but you never hear about it.
May 12, 2026 at 3:08 PM
It's Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) day of awareness.
For the last 8 years, my wife has been bedbound. She can't bathe, can't watch TV, can't get herself to the bathroom, often can't speak.
There are MILLIONS of people with her condition—but you never hear about it.
For the last 8 years, my wife has been bedbound. She can't bathe, can't watch TV, can't get herself to the bathroom, often can't speak.
There are MILLIONS of people with her condition—but you never hear about it.
Today, May 12, 2026, is #MEAwarenessDay. Like quite a few years, I hadn't done anything for today - until just now, when I went through my photos since the last #MEAwarenessDay...and there were only 29. I put them all into this collage. You'll note that mostly I am in bed, with my kitty nurse Piper.
May 12, 2026 at 9:44 PM
Today, May 12, 2026, is #MEAwarenessDay. Like quite a few years, I hadn't done anything for today - until just now, when I went through my photos since the last #MEAwarenessDay...and there were only 29. I put them all into this collage. You'll note that mostly I am in bed, with my kitty nurse Piper.
Reposted by dSavannah
Alice Wong’s Celebration of Life,
March 25 from 11am-1pm PT. Links and info:
March 25 from 11am-1pm PT. Links and info:
March 25, 2026 at 2:48 AM
Alice Wong’s Celebration of Life,
March 25 from 11am-1pm PT. Links and info:
March 25 from 11am-1pm PT. Links and info:
The excellent book _The Things We Don’t Say: An Anthology of Chronic Illness Truths_, edited by Julie Morgenlender is 25% off through Jan 1. Raw, emotional, real #essays about living with #ChronicIllness and the importance of representation.
December 15, 2025 at 7:47 PM
The excellent book _The Things We Don’t Say: An Anthology of Chronic Illness Truths_, edited by Julie Morgenlender is 25% off through Jan 1. Raw, emotional, real #essays about living with #ChronicIllness and the importance of representation.
Reposted by dSavannah
FREE DOWNLOAD TODAY:
Am I Actually Autistic?: Your Guide to Processing the Identity Shock of a Late Autism Discover & Living Unmasked Kindle Edition
by Angela Kingdon
amzn.eu/d/hGCyw1l
Am I Actually Autistic?: Your Guide to Processing the Identity Shock of a Late Autism Discover & Living Unmasked Kindle Edition
by Angela Kingdon
amzn.eu/d/hGCyw1l
Am I Actually Autistic?: Your Guide to Processing the Identity Shock of a Late Autism Discover & Living Unmasked eBook : Kingdon, Angela: Amazon.co.uk: Kindle Store
Am I Actually Autistic?: Your Guide to Processing the Identity Shock of a Late Autism Discover & Living Unmasked eBook : Kingdon, Angela: Amazon.co.uk: Kindle Store
amzn.eu
November 1, 2025 at 8:11 AM
FREE DOWNLOAD TODAY:
Am I Actually Autistic?: Your Guide to Processing the Identity Shock of a Late Autism Discover & Living Unmasked Kindle Edition
by Angela Kingdon
amzn.eu/d/hGCyw1l
Am I Actually Autistic?: Your Guide to Processing the Identity Shock of a Late Autism Discover & Living Unmasked Kindle Edition
by Angela Kingdon
amzn.eu/d/hGCyw1l
Reposted by dSavannah
Freyja Stokes, a real-life #Pratchett scholar, looks at Mrs Palm and the historical connections between sex work and witchcraft... come for the history, stay for some amazing puns.
Read for free: www.speculativeinsight.com
Please share widely!
Read for free: www.speculativeinsight.com
Please share widely!
November 1, 2025 at 8:01 AM
Freyja Stokes, a real-life #Pratchett scholar, looks at Mrs Palm and the historical connections between sex work and witchcraft... come for the history, stay for some amazing puns.
Read for free: www.speculativeinsight.com
Please share widely!
Read for free: www.speculativeinsight.com
Please share widely!
Reposted by dSavannah
“Imagine plugging in a dead cell phone over night. When you awake, you expect it to be at 100%. But when you wake, it’s only at 9% and you have to try and function on that 9 percent. You’re never fully charged.” https://buff.ly/3rRDYWM #chronicillness #severeME #pwME #pwLC
September 4, 2025 at 12:23 PM
“Imagine plugging in a dead cell phone over night. When you awake, you expect it to be at 100%. But when you wake, it’s only at 9% and you have to try and function on that 9 percent. You’re never fully charged.” https://buff.ly/3rRDYWM #chronicillness #severeME #pwME #pwLC
Reposted by dSavannah
It is a truth universally acknowledged that when two different pill bottles open and dump themselves all over the bag you are transporting them in, they must be the two near-identical pills
August 29, 2025 at 5:19 AM
It is a truth universally acknowledged that when two different pill bottles open and dump themselves all over the bag you are transporting them in, they must be the two near-identical pills
Reposted by dSavannah
August 29, 2025 at 4:17 PM
TW: Beth Mazur’s death, and our “meaningless” lives as #MEcfs patients by @julierehmeyer.bsky.social
Holding What Has No Meaning
Almost two years ago, on the winter solstice, I was given the most terrible honor of my life: My dear friend Beth Mazur chose to end her life while visiting me.
jrehmeyer.substack.com
August 17, 2025 at 6:26 PM
TW: Beth Mazur’s death, and our “meaningless” lives as #MEcfs patients by @julierehmeyer.bsky.social
Reposted by dSavannah
#DecodeME A brilliant interview with Chris Ponting by @davetuller1.bsky.social
Chris gave new details, including:
- They got feedback on a draft of the pre-print from independent researchers, to help them test their findings and improve the manuscript.
1/
youtu.be/CGUmcB_YIaA?...
Chris gave new details, including:
- They got feedback on a draft of the pre-print from independent researchers, to help them test their findings and improve the manuscript.
1/
youtu.be/CGUmcB_YIaA?...
Interview with Professor Chris Ponting about the DecodeME results.
YouTube video by David M Tuller
youtu.be
August 10, 2025 at 12:41 PM
#DecodeME A brilliant interview with Chris Ponting by @davetuller1.bsky.social
Chris gave new details, including:
- They got feedback on a draft of the pre-print from independent researchers, to help them test their findings and improve the manuscript.
1/
youtu.be/CGUmcB_YIaA?...
Chris gave new details, including:
- They got feedback on a draft of the pre-print from independent researchers, to help them test their findings and improve the manuscript.
1/
youtu.be/CGUmcB_YIaA?...
Reposted by dSavannah
Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...
Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”
www.science.org
August 6, 2025 at 8:59 PM
Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...
Today, August 8, is #SevereMEday. (Post 3 of 3)
This drawing by Chelsea Buivids so perfectly captures our experience as MEeps. 1/
I remain one of the #MillionsMissing
#SevereME #pwME (#MEep) #UnitedForME
#MEcfs #MyalgicEncephalomyelitis
#CanYouSeeMeNow
#ChronicIllness #Spoonie #InvisibleIllness
This drawing by Chelsea Buivids so perfectly captures our experience as MEeps. 1/
I remain one of the #MillionsMissing
#SevereME #pwME (#MEep) #UnitedForME
#MEcfs #MyalgicEncephalomyelitis
#CanYouSeeMeNow
#ChronicIllness #Spoonie #InvisibleIllness
August 9, 2025 at 1:26 AM
Today, August 8, is #SevereMEday. (Post 3 of 3)
This drawing by Chelsea Buivids so perfectly captures our experience as MEeps. 1/
I remain one of the #MillionsMissing
#SevereME #pwME (#MEep) #UnitedForME
#MEcfs #MyalgicEncephalomyelitis
#CanYouSeeMeNow
#ChronicIllness #Spoonie #InvisibleIllness
This drawing by Chelsea Buivids so perfectly captures our experience as MEeps. 1/
I remain one of the #MillionsMissing
#SevereME #pwME (#MEep) #UnitedForME
#MEcfs #MyalgicEncephalomyelitis
#CanYouSeeMeNow
#ChronicIllness #Spoonie #InvisibleIllness
Today, August 8, is #SevereMEday. (Post 2 of 3)
I don’t normally participate (or like to admit I'm in the severe category), but for some reason I did this year: here is my entry for @meactnet.bsky.social Severe ME Artists Project 2025, a self-portrait I call “Night and Day”. 1/
I don’t normally participate (or like to admit I'm in the severe category), but for some reason I did this year: here is my entry for @meactnet.bsky.social Severe ME Artists Project 2025, a self-portrait I call “Night and Day”. 1/
August 9, 2025 at 1:11 AM
Today, August 8, is #SevereMEday. (Post 2 of 3)
I don’t normally participate (or like to admit I'm in the severe category), but for some reason I did this year: here is my entry for @meactnet.bsky.social Severe ME Artists Project 2025, a self-portrait I call “Night and Day”. 1/
I don’t normally participate (or like to admit I'm in the severe category), but for some reason I did this year: here is my entry for @meactnet.bsky.social Severe ME Artists Project 2025, a self-portrait I call “Night and Day”. 1/
Today, August 8, is #SevereMEday. (Post 1 of 3)
The Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance was started in 2013 1/
I remain one of the #MillionsMissing
#SevereME #pwME #UnitedForME
#MyalgicE #MEcfs #MyalgicEncephalomyelitis
#StrongerTogether #CanYouSeeMeNow
The Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance was started in 2013 1/
I remain one of the #MillionsMissing
#SevereME #pwME #UnitedForME
#MyalgicE #MEcfs #MyalgicEncephalomyelitis
#StrongerTogether #CanYouSeeMeNow
August 9, 2025 at 12:40 AM
Today, August 8, is #SevereMEday. (Post 1 of 3)
The Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance was started in 2013 1/
I remain one of the #MillionsMissing
#SevereME #pwME #UnitedForME
#MyalgicE #MEcfs #MyalgicEncephalomyelitis
#StrongerTogether #CanYouSeeMeNow
The Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance was started in 2013 1/
I remain one of the #MillionsMissing
#SevereME #pwME #UnitedForME
#MyalgicE #MEcfs #MyalgicEncephalomyelitis
#StrongerTogether #CanYouSeeMeNow
Reposted by dSavannah
January 9, 2025 at 6:01 PM
Reposted by dSavannah
Another episode of Unraveled: Understanding Complex Illness just posted. We have our usual rambling conversation this time about Mast Cell Activation Syndrome.
Please take a look, subscribe, and comment. Also always want to hear suggestions for future episodes.
www.youtube.com/@Unraveledpo...
Please take a look, subscribe, and comment. Also always want to hear suggestions for future episodes.
www.youtube.com/@Unraveledpo...
Unraveled: Understanding Complex Illness
David Kaufman, MD, an internist and Ilene Ruhoy, MD, PhD, a neurologist, are both experts in chronic complex illnesses. We focus on those suffering with ME/CFS, hEDS, MCAS, SFN, POTS, autoimmunity, Lo...
www.youtube.com
April 12, 2025 at 12:12 AM
Another episode of Unraveled: Understanding Complex Illness just posted. We have our usual rambling conversation this time about Mast Cell Activation Syndrome.
Please take a look, subscribe, and comment. Also always want to hear suggestions for future episodes.
www.youtube.com/@Unraveledpo...
Please take a look, subscribe, and comment. Also always want to hear suggestions for future episodes.
www.youtube.com/@Unraveledpo...
Reposted by dSavannah
"With 1 in 7 older adults providing care, many while juggling full-time jobs & their own #health issues, the study highlighted a need for #workplace flexibility, health interventions & better access to #caregiving #support.": buff.ly/gL04bMQ
via smu .edu .sg
#singapore
via smu .edu .sg
#singapore
1 in 7 Older Adults Juggle Work, Chronic Illness and Unpaid Caregiving
Singapore, 7 April 2025 (Monday) – New research from Singapore Management University (SMU) Centre for Research on Successful Ageing (ROSA) (新加坡管理大学 幸福老龄化研究中心) has uncovered a growing group of older…
buff.ly
April 12, 2025 at 12:30 AM
"With 1 in 7 older adults providing care, many while juggling full-time jobs & their own #health issues, the study highlighted a need for #workplace flexibility, health interventions & better access to #caregiving #support.": buff.ly/gL04bMQ
via smu .edu .sg
#singapore
via smu .edu .sg
#singapore
Reposted by dSavannah
Reposted by dSavannah
To be truly radical is to make hope possible rather than despair convincing—Raymond Williams
April 10, 2025 at 4:13 PM
Reposted by dSavannah
launches shortly...
crowdfund.berkeley.edu/project/46120
crowdfund.berkeley.edu/project/46120
David Tuller's Trial by Error Spring 2025
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Spring 2025. Your gift will make a difference!
crowdfund.berkeley.edu
April 6, 2025 at 5:29 AM
launches shortly...
crowdfund.berkeley.edu/project/46120
crowdfund.berkeley.edu/project/46120
This is a friend of mine. It’s inhumane.
Poland doesn't even recognise ME/CFS - leaving one man living with it with no way out from domestic abuse
In Poland, a patient can’t even get a diagnosis of ME/CFS, despite it rendering him bed-bound for the past several years
www.thecanary.co/global/world...
In Poland, a patient can’t even get a diagnosis of ME/CFS, despite it rendering him bed-bound for the past several years
www.thecanary.co/global/world...
Poland doesn't even recognise ME/CFS - leaving one man living with it with no way out from domestic abuse
In Poland, a patient can’t even get a diagnosis of ME/CFS, despite it rendering him bed-bound for the past several years
www.thecanary.co
April 10, 2025 at 9:04 PM
This is a friend of mine. It’s inhumane.