#spoonie FT sick since 12/2014 #ChronicFatigue #ChronicPain When brain & body behave: #blogger & #advocate #DogCatTurtleWrangler #wife #feminist she / her
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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.
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."
dSavannah = #disabled #MEep (#pwME) retweeted
I’ve got a friend who was non functional after a few hours with a GI bug.
I gently pointed out their symptoms matched the ones I deal with every single day.
Their response?
“You’re used to it. It’s not the same”.
That’s how disabled people are treated in a nutshell.
dSavannah = #disabled #MEep (#pwME) retweeted
I will be brutally honest, when I first read advocates saying that MAiD was eugenics and dangerous, I didn’t understand.
Then I had it happen to me.
I went to an ER with an acute but treatable condition and was asked “would you like death instead?”
dSavannah = #disabled #MEep (#pwME) retweeted
Palliative care is largely unavailable, mental health support years to get, if ever, disability supports and services nationally inadequate, health systems in peril, persons with disabilities living in isolation and desperation, all factors driving people towards MAiD, and he frames this as a "cause for celebration"
dSavannah = #disabled #MEep (#pwME) retweeted
Say it with me: Disabled people deserve to live even if they can’t work.
dSavannah = #disabled #MEep (#pwME) retweeted
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.
dSavannah = #disabled #MEep (#pwME) retweeted
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
dSavannah = #disabled #MEep (#pwME) retweeted
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
dSavannah = #disabled #MEep (#pwME) retweeted
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…
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#mecfs #mecfsawarenessday #mecfsawarenessday2026 #chronicillness #pwME #spoonie
dSavannah = #disabled #MEep (#pwME) retweeted
‘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
dSavannah = #disabled #MEep (#pwME) retweeted
#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
dSavannah = #disabled #MEep (#pwME) retweeted
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.
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 (!!!).
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
dSavannah = #disabled #MEep (#pwME) retweeted
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
dSavannah = #disabled #MEep (#pwME) retweeted
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
dSavannah = #disabled #MEep (#pwME) retweeted
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
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.
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)