Sign in

dSavannah

@dsavannah.bsky.social
792 followers 928 following 247 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 ❤️💚🧡💛🩵💙💜🤎🖤🩶🤍🩷 linktr.ee/thedsavannah

PostsRepliesMedia
Reposted by dSavannah
James L. Sutter @jameslsutter.bsky.social · 12/05/2026
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.
4247107
dSavannah @dsavannah.bsky.social · 12/05/2026
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.
Red frame around 29 photos of white female in various locations - most in her bed with her brown tabby cat, but a few of her at doctors offices and wearing a mask. Words at top say "I am dSavannah, one of the #MillionsMissing." Words at bottom say "These are photos of my life, May 12, 2025 - May 12, 2026. I’ve been missing since 2014."
1185
Reposted by dSavannah
Mar Hicks @histoftech.bsky.social · 25/03/2026
Alice Wong’s Celebration of Life, March 25 from 11am-1pm PT. Links and info:
2223115
dSavannah @dsavannah.bsky.social · 15/12/2025
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.
Copy of the book _The Things We Don't Say_ next to a brown, white, and black dog, with a purple "sale" tag added.
151
Reposted by dSavannah
Autistic Realms (Helen Edgar) @autisticrealms.bsky.social · 01/11/2025
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
amzn.eu
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
1157
Reposted by dSavannah
Speculative Insight journal @speculativeinsight.bsky.social · 01/11/2025
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."
019183
Reposted by dSavannah
Princess in the Tower @apainprincess.bsky.social · 04/09/2025
“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.” buff.ly/3rRDYWM #chronicillness #severeME #pwME #pwLC
0185
Reposted by dSavannah
rahaeli @rahaeli.bsky.social · 29/08/2025
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
2136813
Reposted by dSavannah
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 29/08/2025
Can anyone recommend an #MECFS & #POTS knowledgeable doctor in the DC area?
31914
dSavannah @dsavannah.bsky.social · 17/08/2025
TW: Beth Mazur’s death, and our “meaningless” lives as #MEcfs patients by @julierehmeyer.bsky.social
jrehmeyer.substack.com
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.
1214
Reposted by dSavannah
Simon McGrath @simonmcg.bsky.social · 10/08/2025
#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?...
youtu.be
Interview with Professor Chris Ponting about the DecodeME results.
YouTube video by David M Tuller
12718
Reposted by dSavannah
Chris Ponting @cgatist.bsky.social · 06/08/2025
Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...
science.org
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”
610849
dSavannah @dsavannah.bsky.social · 09/08/2025
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.
1155
dSavannah @dsavannah.bsky.social · 09/08/2025
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.
1142
dSavannah @dsavannah.bsky.social · 09/08/2025
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"
1105
Reposted by dSavannah
Liz Argall @lizargall.bsky.social · 09/01/2025
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
02010
Reposted by dSavannah
David Kaufman @kaufmanmd.bsky.social · 12/04/2025
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...
youtube.com
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...
1187
Reposted by dSavannah
A Chronic Voice @achronicvoice.com · 12/04/2025
"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
buff.ly
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…
063
Reposted by dSavannah
Rick @rickylongthread.bsky.social · 11/04/2025
19354901973
Reposted by dSavannah
Allen Tien, MD, MHS mdlogix.com 94,698 田一彦 @allentien.bsky.social · 10/04/2025
#OptimismIsAWeapon #StanleyRobinson
042
Reposted by dSavannah
David Tuller @davetuller1.bsky.social · 06/04/2025
launches shortly... crowdfund.berkeley.edu/project/46120
crowdfund.berkeley.edu
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!
33020
dSavannah @dsavannah.bsky.social · 10/04/2025
This is a friend of mine. It’s inhumane.
021
Reposted by dSavannah
Erin Lee @erinmarilee.bsky.social · 06/04/2025
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.
63118
Reposted by dSavannah
Jessica Ellis @baddestmamajama.bsky.social · 09/03/2025
Okay hear me out, instead of springing forward an hour, what if we did four years.
411139150
Reposted by dSavannah
Carrie Marshall - MySeveralWorlds.com @myseveralworlds.com · 28/11/2024
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
48133
Reposted by dSavannah
The Sick Times @thesicktimes.org · 05/02/2025
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
04519
Reposted by dSavannah
Gabrielle A. Perry, MPH @geauxgabrielle.blacksky.app · 25/01/2025
The administration took down the reproductive rights website that women need access to. So The Skimm bought a url and brought the content back. Pass this on! Go to reproductiverightsdotgov.com
buff.ly
ReproductiveRights.Gov Vanished, So We Brought It Back
theSkimm makes it easier to live smarter. You're welcome. Get all the info you need from AM to PM, wherever you are.
7266206
Reposted by dSavannah
mystrangebones @mystrangebones.bsky.social · 24/01/2025
The shutting down of medical research and communication, withdrawal from the WHO, and dismantling or restricting the DHS and Medicare/Medicaid are all eugenics efforts. It's important to contextualize that, and to take it very seriously. #disability #chronicillness
210434
Reposted by dSavannah
C.H. Romatowski @romatowski.bsky.social · 18/01/2025
They’re counting on the public tolerating a 1 in 22 risk because many people don’t really know what ME/CFS looks like. It’s worth seeing for yourself what we’re all being asked to accept. Great doc about it called UNREST streams free on YouTube. Premiered at Sundance, was Oscar-shortlisted.
youtube.com
UNREST Feature Documentary (With Captions and Multilingual Subtitles)
YouTube video by Unrest Film
46424
Reposted by dSavannah
A Chronic Voice @achronicvoice.com · 26/12/2024
“The truth is, sometimes people are just going to be upset with you. They won’t #understand your #boundary & they’ll be unhappy that they’re not getting what u want. How they feel & how they manage those #feelings is out of yr lane": buff.ly/47lBlgE #boundaries #SelfCare
buff.ly
How to Set Boundaries (Without Feeling Bad) - Good Life Project
Wondering how to set boundaries without feeling bad? Here's a proven way you can begin to establish healthy boundaries with others.
073
Reposted by dSavannah
Kelly @broadwaybabyto.bsky.social · 25/12/2024
It’s hard to be chronically ill at the holidays. Let’s be honest - it’s hard year round. People are constantly treating us like burdens or they’re ignoring us altogether. We spend a ridiculous amount of spoons fending off unhelpful & unsolicited advice /2
1752
Reposted by dSavannah
Lauren @thescatto.bsky.social · 29/11/2024
First show of this year’s Nutcracker… Menacing voice: I am here to crack nuts and take names, and I already know all you fuckers.
38714
Reposted by dSavannah
Liz Burlingame @lizmeactga.bsky.social · 22/12/2024
Beth Mazur passed away one year ago. She battled #MECFS for 15 years and was a co-founder of the MEAction Network. She was gone too soon. I'm thinking of her today. That's all. #millionsmissing www.meaction.net/2023/12/22/s...
meaction.net
Sad News From Our Community — Content Warning
We are sharing some sad news. Please put your health first. Content warning for sharing the loss of a community member.
1265
Reposted by dSavannah
Todd Davenport @sunsopeningband.bsky.social · 19/12/2024
Like, PEM isn’t a feature of other conditions. It’s something we see in ME. That’s basically it. People may *screen positive for bits and pieces* of PEM in other conditions. People may have ME *and* another condition, but it’s very important we’re clear that PEM isn’t a part of other conditions.
45215
dSavannah @dsavannah.bsky.social · 19/12/2024
🧵 Ten years ago today at 3:30pm, I turned in grades for the four college courses I was teaching, and that was that. The last day of my life working a regular job. The first day of my life as a full-time, disabled, chronically ill Sick Person.
side view of white female sitting at a desk with her left hand on a keyboard. She is wearing a purple hoodie and purple glasses. She has dark hair with grey streaks. She is looking at a laptop sitting on a stand. The computer screen shows a photo of her working on this draft post. On the desk beside her are lots of colorful pens and piles of items. Pieces of art on are on the wall.
3122
Reposted by dSavannah
Science for ME (S4ME) @s4me.info · 17/12/2024
Cochrane, by dropping their planned review of exercise for #MECFS, disrespects the energy and time of those involved in that review AND leaves the existing review supporting exercise for ME/CFS and #LongCovid. Our petition calls for its withdrawal, www.change.org/p/cochrane-w...
change.org
Sign the Petition
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
68943
Reposted by dSavannah
Claire Zagorski, PhD, MSc, EMT-P @clairezagorski.bsky.social · 11/12/2024
“Well what did people do in the days before modern medicine then???” They died. Died. DIED. EARLY. PAINFULLY. THEY GOT GOT BY SINGLE-CELLED ORGANISMS. (EMBARRASSING.) THEY DIED OVER SHIT LIKE STREP THROAT.
17500150
Reposted by dSavannah
Adriel Rose @aerose.bsky.social · 09/12/2024
“Telehealth Will Die In 3 Weeks Without Congressional Action” www.forbes.com/sites/judyst...
forbes.com
Telehealth Will Die In 3 Weeks Without Congressional Action
Urgent action is needed to pass the Telehealth Modernization Act before it expires, ending telemedicine on Dec. 31. This would be devastating for disabled and rural patients.
18611542
Reposted by dSavannah
Nicole Dake - Author @nicoledakeauthor.bsky.social · 10/12/2024
Telehealth is important for elderly and disabled. Also for those with mental health issues who have difficulty getting into a traditional office setting.
174
Reposted by dSavannah
Adam Bonica @adambonica.bsky.social · 08/12/2024
In today's edition of billionaire math: The 100 richest Americans fortunes grew by $1.13T in 2024 = $8.9K/household. Avg. household spends $5.7K on groceries, $2.1K on gas/yr = $7.8K/household. Those 100 billionaires could've covered everyone's gas & groceries and still be up $156B on the year.
5243113
Reposted by dSavannah
Anne-Marie Newton @amnewtonphd.bsky.social · 08/12/2024
💠 #COVID moves around body & persists in organs - incl brain + heart - for years 💠 Lowers IQ 💠 Children can also get L-CVD Important article from @flinty01.bsky.social @westaustralian.bsky.social
34213
Reposted by dSavannah
Chris Ponting @cgatist.bsky.social · 21/10/2024
A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️ theconversation.com/ignored-blam...
theconversation.com
Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’
The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.
22262123
Reposted by dSavannah
hardcases @hardcases.bsky.social · 06/12/2024
The investigative journalists at Pro Publica have written a recent series of articles exposing United Health Care's outrageous and dishonest claims denial practices. Here are some links: www.google.com/search?q=pro...
google.com
pro publica united health care - Google Search
218542
Reposted by dSavannah
Neurologist Mom @neurologistmom.bsky.social · 06/12/2024
📌 Excellent resource alert for #ME/CFS and severe #LongCOVID patients from Bateman Horne Center, supervised by Lucinda Bateman @advocate4me.bsky.social ! Download The ME/CFS Crash Survival Guide for free from the link below. It’s a 49-page manual. batemanhornecenter.org/education/me...
125724
Reposted by dSavannah
Alyssa Harad @alyssaharad.bsky.social · 05/12/2024
His company was well known for having developed algorithms that systemically killed hundreds of thousands of people with total impunity. You’re not witnessing “coarseness,” you are witnessing decades of grief and rage funneled into a few jokes on the internet made by people with no recourse.
322835