Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
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treesofreverie.bsky.social
Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
@treesofreverie.bsky.social
670 followers 250 following 47 posts
they/them 🏳️‍⚧️ queer, trans non-binary | disabled. neurodivergent. chronic illnesses. | artist. reader. writer. | cats: Charlie & Lola |
Ex-Bookseller 7yrs.

Housebound and mostly bedbound with Severe ME. #MECFS #MillionsMissing #pwME
Posts Replies Media Videos
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
batemanhornecenter.bsky.social
When a loved one with #MECFS or #LongCOVID experiences a crash, knowing how to respond matters. 💙 Our Caregiver Guidance resource offers practical steps for safe, compassionate support during post-exertional malaise (PEM).

Read it now: https://bit.ly/44ZtO4R
#UnitedForME
November 25, 2025 at 7:16 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
emilyesfraser.bsky.social
Yeah 😔 I know I’m not worthless, but I also know society sees me as worthless & that has real consequences
kateviolette.com Kate Violette @kateviolette.com · 1d
sick people should be able to count on social programs for care so we don't have to put ourselves through self-esteem shredding relationships just to get sufficient help

I feel so incredibly worthless today and am questioning why I'm even on this planet, and while part of me knows--
November 25, 2025 at 6:39 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
thecovidinfoguy.bsky.social
"If You Suffer from Urgent Normal Syndrome, Ask for Help"

Published: 26 June 2023

Urgent normal syndrome is defined by:

🔸Unhealthy attraction to crowded indoor spaces
🔸Anxiety at the sight of masks or air purifiers
🔸An urge to downplay threats
🔸Avoidance of “bad news"

Source: archive.md/EVlwU
A screenshot of an article by Jessica Wildfire, published on 26 June 2023, titled “If You Suffer from Urgent Normal Syndrome, Ask for Help.” Below the title is an illustration showing a lone man in a suit and mask standing apart from a dense crowd of people holding umbrellas. The crowd is sketched in muted tones and blends together in the rain, while the solitary man stands clearly defined, holding a briefcase and facing the masses. The scene conveys isolation, contrast, and the feeling of being one person against a society rushing toward “normal.”
November 24, 2025 at 7:33 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
batemanhornecenter.bsky.social
1 in 4 people with #MECFS are housebound or bedbound. 💙 @emergeaustralia.bsky.social’s evidence-based guide offers strategies for daily care, communication, & managing sensitivity, while protecting both patient & caregiver wellbeing.

Read more: https://bit.ly/4nD2Add
#UnitedForME
November 19, 2025 at 5:14 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
soniasulaiman.bsky.social
You know, I want to read more utopian fiction. Something has changed in me. What are some of your favourite reads imagining a future where we all survive this, and build something together?
November 19, 2025 at 7:32 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
thrasherxy.bsky.social
“Don’t let the bastards grind you down. I love you all.”
Black text on a yellow background - This is Alice's friend Sandy Ho, posting. Per Alice's wishes, this message is being shared at the time of her passing. 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.
November 15, 2025 at 6:15 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
kkarapanagiotidis.bsky.social
November 14, 2025 at 10:26 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
broadwaybabyto.bsky.social
It’s impossible to convey the crippling fatigue of chronic illness.

Naps don’t help.

A full nights sleep doesn’t exist. You’re plagued by pain and other symptoms that mean you can’t remember what it felt like to sleep through the night.

Wired & tired is your new normal.
November 14, 2025 at 10:39 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
equitableforall.com
Please consider pre-ordering Dr. Gayatri Sethi's next book, Diaspora-ish: Notes on Identities, Unbelonging, & Solidarities for a collective learning resource that offers inquiries about diasporic identity & belonging aimed at practicing global solidarity: www.sambasivanandparikh.com/products/dia...
(PRE-ORDER) Diaspora-ish (Feb 2026)
A collective learning resource that offers inquiries about diasporic identity and belonging aimed at practicing global solidarity. In an extension of her genre-bending nonfiction debut Unbelonging, Ga...
www.sambasivanandparikh.com
September 14, 2025 at 5:55 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
meactnet.bsky.social
Sign up for these 2 workshops for #caregivers.

1. Nov. 16 @ 3 pm ET: 10 Lessons from 20 Years of Caregiving — Kim Moya
ow.ly/gtAP50XlbZb

2. Nov. 22 @ 3 pm ET: Chronic Illness Caregiving for Youth, Teen, & Adult Children — Denise Lopez-Majano ow.ly/3IcV50XlbZh

#pwME #ChronicIllness
Graphic about two upcoming Caregiving webinars with MEAction. Photo of Kim Moy (smiling Asian American woman with light-medium skin tone and graying hair, wearing a green sweater and multicolor scarf) and Denise Lopez-Majano (fair skinned, woman wearing glasses with graying, medium length hair wearing a light blue fleece top). Under each photo is their name and the name of the webinar along with dates Nov 16 and Nov. 22 both at 3 pm ET.
November 10, 2025 at 6:23 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
sandyosullivan.bsky.social
Join us on Queer as… a podcast as we speak with Campbell X whose work deals with queer memory, desire and Blackness across the African diaspora through filmmaking, theatre and curation. He talks with us about #LandBack, trans bodies and the promise of ancestors.

queer-as.org/a-podcast/ca...
Campbell X
Campbell X Campbell X’s work deals with queer memory, desire and Blackness across the African diaspora through filmmaking, theatre and curation. He directed the award-winning queer urban roma…
queer-as.org
November 11, 2025 at 4:24 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
emergeaustralia.bsky.social
Welcome to Emerge Australia’s #mecfs and #longCOVID Action Forum event in Parliament House, Canberra, today. Our event, “From stigma to science: educating for change” is live streamed. You can register here: us02web.zoom.us/meeting/regi...

We will be live posting on this thread. 🧵
Blue and white banner with "Emerge Australia" logo on the left. Text reads "From stigma to science: educating for change. ME/CFS and long COVID Action Forum.
October 30, 2025 at 2:00 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
berlin-buyers-club.bsky.social
URGENT (Sydney, AU): A person with very severe ME is rapidly declining (BMI 13). They need a doctor who can immediately organise jejunal feeding to stabilise them.

If you can help, or know someone who can, DM us right now.

Please share widely. This is time-sensitive.
URGENT: EMERGENCY HELP NEEDED! A person with very severe ME and other comorbidities based in Sydney, Australia, is currently at serious risk of irreversible damage to their health thanks to malnourishment and the inability to eat. They have already tried accessing care via public and private routes, but have been unsuccessful in accessing the necessary procedure that would save their life. An attempt to place an NG tube at home was unsuccessful, and they are declining rapidly. Their BMI is currently 13, and they urgently need access to a doctor who can organise jejunal feeding as quickly as possible so that they're able to stabilise. It's important to note that they are unable to tolerate overstimulating hospital environments for longer than necessary. Please share and get in contact if you know somebody who can help. This is time sensitive.
October 16, 2025 at 11:49 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
clembastow.bsky.social
Bookish in Bendigo have pulled out as Bendigo Writers Festival's bookseller - this principled move comes at great cost to them as an independent store. If you've been thinking of purchasing a book (esp. one by someone who's also pulled labour from BWF), consider going to them! +61 3 5406 0596
August 15, 2025 at 4:39 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
franhaddock.bsky.social
Community video for Severe ME awareness day, please share and tag politicians and public figures who need to see this!

All participants IG handles tagged at the end 💙💙

#SevereME #SevereMEAwarenessDay #MECFS #MillionsMissing #UnitedForME
August 8, 2025 at 10:15 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
emilyesfraser.bsky.social
Louise Glück’s The Wild Iris in honor of everyone who knows what it is to be consciousness buried in the dark earth

Thinking of everyone w/ severe & very #severeME today (knowing many won’t see this bc they can’t look at screens…& too many others are no longer with us 🕯️💙)

#SevereMEDay #UnitedforME
At the end of my suffering there was a door. Hear me out: that which you call death I remember. Overhead, noises, branches of the pine shifting. Then nothing. The weak sun flickered over the dry surface. It is terrible to survive as consciousness buried in the dark earth. Then it was over: that which you fear, being a soul and unable to speak, ending abruptly, the stiff earth bending a little. And what I took to be birds darting in low shrubs. You who do not remember passage from the other world I tell you I could speak again: whatever returns from oblivion returns to find a voice: from the center of my life came a great fountain, deep blue shadows on azure seawater.
August 8, 2025 at 10:45 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
me-cfs.bsky.social
Very Severe ME/CFS:

Trapped, lying,
on a thin layer of ice,
with a bag over your head.

Every time you try shuffle about, to try get the bag off,
or sit up,
you can hear the ice crack.

And you know,
if it breaks,
it’s over for you.
August 8, 2025 at 11:35 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
alexisme.bsky.social
Today is Severe ME day. Please take a moment to understand our reality. ❤️‍🩹
Black text on a green background. Having severe ME is not receiving care because of 70 years of neglect and gaslighting Black text on a green background. Having severe ME is being one of the sickest patients in the hospital yet receiving the least medical care. Black text on a green background. For those with severe ME it can mean being spoonfed by your carer not being able to eat at all and needing tube feeding. Black text on a green background. Having severe ME is watching friends die from lack of support or basic medical care.
August 8, 2025 at 11:51 AM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
exceedhergrasp1.bsky.social
Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS!

Pre-print plus li'l video before we get into a deeper dive.

Vid: www.youtube.com/watch?v=0S5u...

Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
www.pure.ed.ac.uk
August 7, 2025 at 3:15 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
solveme.bsky.social
This #SevereME Awareness Month, we recognize those living with the most severe & isolating form of #MECFS. Solve & @batemanhornecenter.bsky.social co-hosted a
4-part series on caregiving, legal planning, treatment, and research.

Watch Pt. 1 on Caregiving:
ow.ly/6CUn50WAoW4

#UnitedForME
August 5, 2025 at 9:57 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
meactnet.bsky.social
In August, we especially take time to honor the 25% living with the most severe form of this disease & remember those who have lost.

August 8th is the Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance, started by the 25% ME Group as a response to the death of Sophia Mirza.
Muted photo with two rocks with a word on them- pause and reflect. Text in top corner: "Let us pause together before Severe ME Day." #MEAction logo in bottom corner.
August 4, 2025 at 6:41 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
thesicktimes.org
If you have a complex chronic illness, you're probably familiar with the experience of a doctor telling you that your test results are normal, while your body feels like it's full of noodles and static electricity. As a linguist, M Corvi is looking for words to measure sickness. bit.ly/45a6lj2
Graphic showing several hands all holding measurement tools, emerging from an open book. One holds an abacus, another a sextant, another two vials of blood, another a skull with lightning bolts coming out of it. The hands are interspersed with overlapping circles in blue, yellow, red, and green. The text reads, “The Sick Times. As a linguist, I want to find the words to measure chronic illness. By M Corvi.” "The end result is always going to be that, no matter how much testing I undergo, my test results won’t ever wholly reflect the internal, imperceptible-to-others, alienating realities that I experience." - M Corvi
August 1, 2025 at 5:18 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
broadwaybabyto.bsky.social
Can we please get mandatory masking back on cancer wards and healthcare settings now?

We know COVID can be oncogenic.

We know it’s a much higher risk to those who are immune compromised.

Yet healthcare workers won’t mask around cancer patients & many have died.

Mask up!
Respiratory viral infections awaken metastatic breast cancer cells in lungs - Nature
Mouse models show that respiratory infections from viruses such as influenza and SARS-CoV-2 can trigger metastasis of dormant breast cancer cells in the lungs, a finding supported by epidemiological d...
www.nature.com
August 1, 2025 at 8:15 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
me-cfs.bsky.social
This is Isla at age 8.

She died at age 18 with severe ME/CFS.

Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
More, more, more You are meant to understand my illness but you all do is push, push, push. Nothing I do is ever good enough. I am proud and think you will be pleased with me as I have been going to school much more than before, but all you do is say I need to stay there longer, and if I feel ill I can’t [go] home early. I can’t get to sleep at night and you make me feel like it is my fault. You tell my parents to ignore me at night time, even when I am upset and feeling scared and lonely. Lucky for me they ignore you! I am so tired but you say I still have to get out of bed and walk even at the weekend after I have been at school all week. I don’t like coming to see you, it makes me worry what you are going to ask me to do next. My mum tells you I sometimes feel much worse but you tell us I just have to do more, more, more. You speak to my school and I worry they will be on your side and expect more of me too. I worry about what you are going to tell us to do next. I think you should care more about the children who come to see you and try to understand what they are going through. From Isla aged 8
July 31, 2025 at 12:40 PM
Reposted by Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)
swastrosarah.bsky.social
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
July 31, 2025 at 6:45 AM