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dsavannah.bsky.social
dSavannah
@dsavannah.bsky.social
760 followers 920 following 240 posts
~ 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
Posts Replies Media Videos
Reposted by dSavannah
autisticrealms.bsky.social
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 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
Reposted by dSavannah
speculativeinsight.bsky.social
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!
Purple background, white text, which says Mrs Palm is an interesting Discworld character, as is the historical context her story references. Discworld's foremost witch, Granny Weatherwax, describes Mrs Palm as "almost a witch."
November 1, 2025 at 8:01 AM
Reposted by dSavannah
apainprincess.bsky.social
“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
Reposted by dSavannah
rahaeli.bsky.social
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
Reposted by dSavannah
emilyesfraser.bsky.social
Can anyone recommend an #MECFS & #POTS knowledgeable doctor in the DC area?
August 29, 2025 at 4:17 PM
Reposted by dSavannah
mcollinsmorton.bsky.social
It is both astonishing and appalling that so many millions of people prefer suffering the extreme, irreparable, life-threatening harm of Covid-19 to wearing a respirator mask.

#COVID19 #respirator
August 19, 2025 at 1:26 AM
dsavannah.bsky.social
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
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?...
Interview with Professor Chris Ponting about the DecodeME results.
YouTube video by David M Tuller
youtu.be
August 10, 2025 at 12:41 PM
Reposted by dSavannah
cgatist.bsky.social
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
dsavannah.bsky.social
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
A drawing of a naked human on the ground, folded with their legs under them and their arms stretched behind them. A section of their back is missing, with springs coming out of it. In the foreground are two batteries and a battery cover, as if they had spontaneously sprung out of the person’s body.
August 9, 2025 at 1:26 AM
dsavannah.bsky.social
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/
Two black and white stylized images, the same on each side, one turned toward the left and one toward the right. The left side is dark grey, and the right side is light grey. It shows a bed, dresser, piece of artwork, and closed window reflected in a mirror, with a human face propped up on pillows at the bottom.
August 9, 2025 at 1:11 AM
dsavannah.bsky.social
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
A bench sits in front of a frame on the wall. Inside the frame is the #MEAction logo in red, and the words "Severe ME Artists Project Gallery 2025. Now open for virtual showing at #MEAction website: bit.ly/SMEAP25"
August 9, 2025 at 12:40 AM
Reposted by dSavannah
lizargall.bsky.social
Would you like solutions or comfort?

#raaar
Transcript Thing 2: I have a sad Thing 1: Are you looking for solutions or comfort? Thing 2: I would like to be angry, then sad, then comforted, then adventure for solutions, then giggles Thing 1: Let’s start! Thing 2: Raar
January 9, 2025 at 6:01 PM
Reposted by dSavannah
kaufmanmd.bsky.social
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...
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
Reposted by dSavannah
achronicvoice.com
"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
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
Reposted by dSavannah
rickylongthread.bsky.social
April 11, 2025 at 10:23 PM
Reposted by dSavannah
allentien.bsky.social
#OptimismIsAWeapon #StanleyRobinson
drreznicek.bsky.social Matthew L Reznicek @drreznicek.bsky.social · Nov 6
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
davetuller1.bsky.social
launches shortly...
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
dsavannah.bsky.social
This is a friend of mine. It’s inhumane.
thecanaryuk.bsky.social The Canary @thecanaryuk.bsky.social · Apr 9
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...
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
Reposted by dSavannah
erinmarilee.bsky.social
A friend alerted me that @bluegeorgia.bsky.social posted this pic from my #HandsOff speech on the other place.

Huge thanks to @wilhelminaj.bsky.social for allowing me to tell her story, to @exceedhergrasp1.bsky.social and #MEActionGA for aiding me, and to Atlanta for your roaring support.
A frail woman stands on a stage between her wheelchair in the foreground and a crowd of thousands of protestors in the background, delivering her protest speech. She is wearing a red MEAction t-shirt. A sign language interpreter stands to her right interpreting her speech.
April 6, 2025 at 3:56 PM
Reposted by dSavannah
baddestmamajama.bsky.social
Okay hear me out, instead
of springing forward an hour, what if we did four years.
March 9, 2025 at 7:37 AM
Reposted by dSavannah
carriekellenberger.bsky.social
Here's a thread of #art in my Art Studio and ready to ship! I hope it's easier to see it here in one place.
🧚‍♀️
#CollageArtist #TaiwanArtist #Papercrafts #Handicrafts #MySeveralWorlds #CarrieKellenberger #artist #SmallBusinessOwner #handmade #Design #WhimsicalArt #Papercutting #HandmadeTaiwan
A collage of 3D Fairy Forest collages by Carrie Kellenberger
November 28, 2024 at 2:42 PM
Reposted by dSavannah
thesicktimes.org
A 2019 Cochrane review controversially recommended exercise therapy for ME/CFS. While Cochrane acknowledged problems with the review and promised a complete update, they abruptly dropped the project in December 2024.

Read more from @davetuller1.bsky.social at The Sick Times. bit.ly/3Q2LhUz
A purple background features a photo of Cochrane editor-in-chief Dr. Karla Soares-Weiser wearing a turtleneck and wool blazer. To her left, a screenshot of the controversial 2019 review called "Exercise therapy for chronic fatigue syndrome." On top of the review is a stamped black text box with white alphanumeric symbols indicating swear words. At the bottom of the image, white text on a black background reads, "The Sick Times. 'Really pissed off': Cochrane receives backlash from advocates and experts after abandoning ME/CFS review. By David Tuller." Key points you should know: Cochrane produces systematic reviews of medical interventions that are influential for clinicians seeking to provide evidence-based care. A 2019 review controversially recommended exercise therapy for ME/CFS, despite questions about the quality of the evidence and the experiences of people with the disease. Cochrane acknowledged problems with the review and promised a complete update, then abruptly dropped the update project in December 2024. The situation has sparked sharp criticism of Cochrane from ME/CFS advocates and researchers. An online petition seeking withdrawal of the 2019 review has attracted more than 15,000 signers. It appears that Cochrane’s actions are, from its perspective, irreversible. But unless it acts quickly to clean up this mess, the long-term damage to its reputation could be irreversible as well. - Senior fellow in public health and journalism at the Center for Global Public Health at the University of California, Berkeley
February 5, 2025 at 6:56 PM