dSavannah

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)

Copy of the book _The Things We Don't Say_ next to a brown, white, and black dog, with a purple "sale" tag added.

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.

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

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."

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!

Gross.

“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

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

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

It sucks beyond all suckage.

I tried it too and we didn’t get along.

But I’ve heard from lots of patients who were helped by it.

{{{Hugs}}}.

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

{{{Hugs}}}.

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

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?

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.

TW: Beth Mazur’s death, and our “meaningless” lives as #MEcfs patients by @julierehmeyer.bsky.social

There’s so many good ones. 😁

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!

YouTube video by David M Tuller Interview with Professor Chris Ponting about the DecodeME results.

#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?...

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”

Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...

Severe ME Artists Project 2025 #MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

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

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/

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/

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.

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

DSavannahRambles 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

Severe ME Artists Project 2025 #MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

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/

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/

Home - funcap.no 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/