iiinova — where your digital self keeps evolving

dSavannah @dsavannah.bsky.social · 12/05/2026

The rest? I'm only dressed because I'm at a doctor appointment, and if I'm out of my house, I'm wearing a mask. I used to do a lot more posting about #MEAwareness, and then its baby sister, #LongCovid (which I now have), but... I remain one of the #MillionsMissing #pwME #MECFS #ChronicIllness

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."

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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:

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dSavannah @dsavannah.bsky.social · 25/03/2026

This is pretty much the same (at first glance) as Transcranial magnetic stimulation (TMS), which I had, and got a LOT worse. I know several #peME who had it and experienced the same outcome.

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dSavannah @dsavannah.bsky.social · 15/12/2025

Read my review: wp.me/p2Crn0-25J Order the ebook: books2read.com/u/bOXvwg Order the print book: books2read.com/u/bOXvwg #DisabilityAwareness #Disability #Spoonie #Advocacy #Activism #StrongerTogether #YouAreNotAlone (photo courtesy of the author; her dog Larry is showing off the book)

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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.

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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."

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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

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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

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Reposted by dSavannah

emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 29/08/2025

Can anyone recommend an #MECFS & #POTS knowledgeable doctor in the DC area?

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dSavannah @dsavannah.bsky.social · 19/08/2025

It sucks beyond all suckage.

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dSavannah @dsavannah.bsky.social · 19/08/2025

I tried it too and we didn’t get along. But I’ve heard from lots of patients who were helped by it.

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dSavannah @dsavannah.bsky.social · 19/08/2025

{{{Hugs}}}. It’s a reality that’s hard to fathom, even when living in it.

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dSavannah @dsavannah.bsky.social · 17/08/2025

This is especially powerful: “I felt sort of pre-dead: I’d given up all my goals for life, every purpose I’d organized myself around, every expectation that used to ground me. And yet I was still alive. So what was left, with all of that gone? What is it to live, pre-dead?” What indeed?

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dSavannah @dsavannah.bsky.social · 17/08/2025

There’s so many good ones. 😁

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dSavannah @dsavannah.bsky.social · 11/08/2025

The only thing that helped my brain fog was the amino acid Phosphatidyl Serine. (Some ppl do better with the -choline version.) If I forget, I can tell my brain is off. It’s the only supplement I recommend whole heartedly!

Simon McGrath @simonmcg.bsky.social · 10/08/2025

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?...

youtu.be

Interview with Professor Chris Ponting about the DecodeME results.

YouTube video by David M Tuller

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Severe ME Artists Project 2025

It usually takes me about an hour to be able to get out of bed when I wake up. And that's on a good day. Thank you Chelsea for letting me share. Be sure to visit the @meactnet.bsky.social Severe ME Artists Project 2025 to see more art created by those of us suffering from MEcfs. 5/5

meartistsproject.com

#MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

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because we all say a lot how it’s like our batteries just don’t ever fully charge, and sometimes [they’re at] at 0%. And then it’s like, ‘ah what if we just sometimes feel we don’t have them batteries at all?’.” Which is definitely my experience with MEcfs. Sometimes I just can’t move. 4/

Regarding her drawing, she told me “I think I just felt particularly awful that day, and just utterly drained and like the life had been sucked out of me, so the thought of batteries being taken out of me was floating round in my head, 3/

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Chelsea lives in the U.K. and is in one of my MEcfs support groups. She doesn’t consider herself severe, more on the worse end of moderate, and said “It is a hard thing to be able to come to terms with; I was severe for a couple of months a while back and I was in denial about it at the time.” 2/

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.

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Today, 8/8, is Severe ME Day (and coincidentally, my 16th wedding anniversary). I’ve been ill for over a decade now, and until this year, I never considered myself “severe”. Close to it - on the...

(BTW, although the gallery can be viewed on mobile, it's best on web to get the full impact.) *Apparently I admitted it last year, but it's only showing up in my memories for my FB page, not my FB profile, and I of course completely forgot. 8/8

facebook.com

DSavannahRambles

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Severe ME Artists Project 2025

To see the other pieces submitted to #MEAction Severe ME Artists Project 2025, please visit the gallery site. I especially love the first piece of art, "12ME: 21 of 90 Artists", the peacock with colorful spoons instead of feathers. 7/

meartistsproject.com

#MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

From the International Consensus Criteria (ICC) for MEcfs, the only symptom I don't have is swollen lymph nodes. I could go on, but it's awfully depressing & I'm awfully tired. (You can also read more about my experience with MEcfs by visiting my long-languished blog.) 6/

dsavannah.com

dSavannahRambles

plays well with words

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FUNCAP is used to assess functional capacity in patients with diseases where post exertional symptom exacerbation (PEM, PENE, PESE) is present

(I fall more on the severe-moderate side than severe-severe side.) More proof: My FUNCAP (Functional Capacity) score is 1.9, when a healthy person's is 5.8-6.0. Severe. My Bell Disability Scale score is 20%-30%. Severe. 5/

funcap.no

Home - funcap.no

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As I wrote in Post 1, those of us with MEcfs don't like to admit the severity of our illness. I certainly don’t like to admit it, especially not to myself, and am just now saying it out loud*. But spending most of my life in bed (65-75% of the time) means I'm severe. 4/

I also don't usually create with photoshop - my photos are typically straight out of camera with maybe cropping. But here we are. This is where I spend most of my life. In bed. Staring at myself in the mirror opposite. Blinds closed. Many times unable to sleep or I do anything. Just ... stuck. 3/

It’s a photograph I took of myself, then edited & beat up in photoshop. I created it so long ago, I don’t really remember my thought process. I did some more editing before I submitted it (my OCD required that I remove artifacts & things that were distracting). 2/

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.

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PS. Also in honor of #SevereMEDay, four organizations - @openmedf.bsky.social, @batemanhornecenter.bsky.social, @solveme.bsky.social, & @meactnet.bsky.social - have launched #UnitedForME, a shared hashtag to amplify stories, art & education from the Severe ME community. 10/10

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(If you have MEcfs or another energy-limiting illness, be sure to pace yourself. It can be very overwhelming and sad.) 9/ I remain one of the #MillionsMissing #SevereMEDay #SevereME #pwME #UnitedForME #MyalgicE #MEcfs #MyalgicEncephalomyelitis #Advocacy #StrongerTogether #CanYouSeeMeNow

Severe ME Artists Project 2025

with a Writer's Gallery, a Video Gallery, and an Art Gallery. Over 100 of us MEeps submitted pieces, including me; see my next post for the art I sent in, and scroll through the #MEAction Gallery when you get a chance. It's very powerful. 8/

meartistsproject.com

#MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

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and over many days or even months. Functionality and abilities vary, but we all have one thing in common: this disease really really really sucks. (And yes, that's the scientific term for it.) In honor of Severe ME Day, @meactnet.bsky.social is sharing the Severe ME Artists Project 2025, 7/

and the one after that. And sometimes it lasts 5-7 days. (Any guesses how many days doing these posts will cost me?) Many of us with MEcfs are isolated, alone. Or our only type of support is online. Many cannot communicate at all. Many can create, but only by using their time sparingly, 6/

Its hallmark symptom is called post-extertional malaise (PEM) [or postexertional neuroimmune exhaustion (PENE)]: where any sort of exertion - cognitive, physical, emotional - causes a worsening of symptoms. Some people get PEM immediately; in my case, it's the next day. And the one after that, 5/

MEcfs is the worst disease you've never heard of (unless you've been reading my blog posts where I've banged on about it for the last decade I've been ill). It's a complex chronic disease that impairs multiple body systems: neurological, cardiovascular, respiratory, immune, sleep, and more. 4/

dsavannah.com

dSavannahRambles

plays well with words

Sophia died from M.E. in November 2005. The day before she died I promised her that her life would help many other people.

(Which, by the way, 25% is only an estimate of the number of patients with severe ME; the actual percentage may be much higher! We tend to downplay our symptoms. No one wants to admit they are that sick. As the meme says: "I don't pretend to be sick, I pretend to be WELL.") 3/ Sophia's story:

sophiaandme.org.uk

Sophia and M.E.

The 25% M.E. Group is a nationwide charity. We campaign to raise awareness of M.E. and provide services to people affected by severe M.E. (Myalgic

by the 25% ME Group (25megroup.org) as a response to the death of Sophia Mirza from the UK, only 32 years old when she passed, the victim of disbelief & medical abuse. It is a day to honor the 25 percent living with the most severe form of this disease, and remember those who have died from ME. 2/

25megroup.org

Home - 25% ME Group