@dSavannahCreate profile picture
dSavannah = #disabled #MEep (#pwME) @dSavannahCreate

#spoonie FT sick since 12/2014 #ChronicFatigue #ChronicPain When brain & body behave: #blogger & #advocate #DogCatTurtleWrangler #wife #feminist she / her

Joined April 2012
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  • Following 3,480
  • Followers 2,635
801 Photos and videos
Today, May 12, 2026, is #MEAwarenessDay. Like quite a few years, I haven't done anything for today - until just now, when I went through all my photos since the last #MEAwareness Day and, well, there were only 29. I put them all into this collage.
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."

ALT 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."

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dSavannah = #disabled #MEep (#pwME) retweeted
Briana Mills, LMFT ♿️🏳️‍🌈🍉@theBrianaMills
May 23
Say it with me: Disabled people deserve to live even if they can’t work.
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dSavannah = #disabled #MEep (#pwME) retweeted
Jack | amatica health
@JackHadfield14
May 23
People don’t realise how much you can lose and still have to live every hour. I’ve lost walking, my brain, normal vision, friends, food, music, love, career, hobbies, sunlight, sleep… I can’t even grieve it without getting sicker. Disease takes more than you realise you had.
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dSavannah = #disabled #MEep (#pwME) retweeted
Vlad Vexler
@VladVexler
May 12
1 in 200 humans on earth are missing from their own lives due to ME. ME is a devastating physical illness that makes rubble of the lives of patients and families. Clinically, we’ve known it’s real for decades. Biologically, we had proof by the 1990s. But society still acts like it’s not real. This is a historic injustice. #MEAwarenessDay
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dSavannah = #disabled #MEep (#pwME) retweeted
Sarah O'Connell@SarahOC_MECFS
May 12
My family has 5 members with #MyalgicEncephalomyelitis over 3 generations; my mother, me, my sister & my two children. When my son developed #LongCovid & ME I was beyond heartbroken. He is now 11 & attends school part-time. Pls support #MEAwarenessDay #pwME #MEKills #MECFS
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dSavannah = #disabled #MEep (#pwME) retweeted
Whitney Dafoe
@DafoeWhitney
May 12
We Need Your Help Imagine starving to death and being allergic to all food.  And everyday trying to decide between starvation and a deathly allergic reaction.  ME/CFS is like an allergy to energy expenditure.  Imagine everyday trying to decide between doing something that makes you feel alive or deathly sickness.  The more you do, the less alive you feel.  And the less you do, the less alive you feel.  And the more you do, the less you are physically capable of doing.  That is ME/CFS.  Everyday.  For decades.   But if you don’t have ME/CFS, and are not allergic to life itself, you could decide right now to help us.  And it won’t cost you anything but an extra work day, or one less toy or luxury, or some other small sacrifice in an otherwise life full of blessings and opportunity.  Which I would not want to take away for a second.  But a small sacrifice from you would go a long way towards helping people living in absolute hell.   Go here to donate to ME/CFS research:  whitneydafoe.com/donate Learn more about ME/CFS here: whitneydafoe.com/mecfs/whati… ================= ================= #mecfs #mecfsawarenessday #mecfsawarenessday2026 #chronicillness #pwME #spoonie
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dSavannah = #disabled #MEep (#pwME) retweeted
Carole Bruce@CaroleBruce17
May 12
‘The withholding of lifesaving care is not a theoretical concern: it is a documented, devastating outcome of misapplying psychosomatic models to a serious, organic illness.’ BMJ opinion piece on treatment of #ME patients. Too many die Too many suffer for decades. #MEAwarenessDay
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dSavannah = #disabled #MEep (#pwME) retweeted
Ben H@benh_mecfs
May 12
#MEAwarenessDay 10 years 99.9% bedbound. 15 years since the illness began. 23 y/o to 38 y/o in the blink of an eye, but the extraordinary suffering has been felt in every second of those years. And there are thousands like me, or worse. #MECFS #ME #MEAwarenessDay
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dSavannah = #disabled #MEep (#pwME) retweeted
Christoph Ströck
@cstroeckw
May 12
Today is ME/CFS Awareness Day. I am a very severe ME/CFS patient. I have not left my mattress in around 9 years, and I have been sick much longer. I cannot have visitors. I cannot watch TV. I can speak only very little with my caregivers. I can only read a few pages per day, sometimes less. I live mostly in darkness, in constant pain and physical discomfort. There has not been a single day in the last 10 years that was not “ME/CFS Awareness Day” for me. For millions of patients, this disease is not a campaign, a hashtag, or a yearly reminder. It is total life destruction, every single day. What we need is not symbolic awareness alone. We need serious research, clinical infrastructure, political recognition, urgency, and your help.
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Today, May 12, 2026, is #MEAwarenessDay. Like quite a few years, I haven't done anything for today - until just now, when I went through all my photos since the last #MEAwareness Day and, well, there were only 29. I put them all into this collage.
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."

ALT 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."

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more replies
I used to do a lot more posting about #MEAwareness, and then its baby sister, #LongCovid, but... I'm tired. I'm still sick. I often feel I'm screaming into the void. I haven't updated my blog since 2021 (!!!).
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However, many of the posts are still valid, & you can read them at dsavannah.com/blog/index.php…. I remain one of the #MillionsMissing #FrailAndFurious #pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice

#MEcfsAwareness Archives - dSavannahRambles

dsavannah.com
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dSavannah = #disabled #MEep (#pwME) retweeted
Lizzy H@hopefullizzy
May 5
Feeling a bit disconnected with M.E awareness week this year. It’ll be my 17th one, yet we still have no severeME services, and no specialist hospital beds in the UK, no treatments, and there is still a lot of stigma. I have even less energy to fight for the bigger stuff. #MECFS
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dSavannah = #disabled #MEep (#pwME) retweeted
Carole Bruce@CaroleBruce17
May 9
Two poems by James Strazza who died this week. He had been suffering with severe #ME since 2019. A rare and sensitive man. It’s incredibly sad that once again we are mourning one of our own. May those that have blocked research and psychologised ME feel the pain of their actions
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dSavannah = #disabled #MEep (#pwME) retweeted
Lizzy H@hopefullizzy
May 12
Today is #worldMEday and part of #MEawarenessweek I’ve had this horrific disease since I was 14yrs old. A fit, health and active teenager, until I got a severe gastric flu, and never recovered. For the last 7yrs in various ways my health has been declining, until near death
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The excellent book _The Things We Don’t Say: An Anthology of Chronic Illness Truths_, edited by Julie Morgenlender (@ChronicTruths) is 25% off through Jan 1. Raw, emotional, real #essays about living with #ChronicIllness and the importance of representation.
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Read my review: wp.me/p2Crn0-25J Order the ebook: books2read.com/u/bOXvwg Order the print book: books2read.com/u/bOXvwg #DisabilityAwareness #Advocacy #Activism #StrongerTogether #YouAreNotAlone (photo courtesy of the author; her dog Larry is showing off the book)
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I’m so saddened to learn this.
Alice Wong 王美華@SFdirewolf
15 Nov 2025
Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all.

ALT Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all.
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RT @SFdirewolf:
Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all.

ALT Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all.
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dSavannah = #disabled #MEep (#pwME) retweeted
Julia Marie@julia_doubleday
15 Nov 2025
In disbelief reading this. As I’ve adjusted to my very-disabled body over the past 2 years, @SFdirewolf has been a guiding light, an inspiration. Disabled ppl have to defend so ferociously their right just to exist. She did so with eloquence, rage, righteousness, joy. RIP 💔
Alice Wong 王美華@SFdirewolf
15 Nov 2025
Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all.

ALT Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all.
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