Jamie 🏳️‍⚧️🏳️‍🌈 (they/them)

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.

“Don’t let the bastards grind you down. I love you all.”

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.

(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...

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...

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.

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

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…

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...

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.

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. 🧵

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.

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.

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

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

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.

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

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.

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.

Today is Severe ME day. Please take a moment to understand our reality. ❤️‍🩹

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... 🧪 🧵

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

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.

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.

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

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

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...

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!

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.

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

Virtual Support Groups for Carers & Supporters 🌿 at Emerge Australia. If you're assisting someone with ME/CFS or long COVID, join us for a community that understands your journey. Share, gain emotional support, and learn practical strategies. Next groups start October 2025. vist.ly/3zm75

When a disabled person asks for help, please understand we’ve likely exhausted all options before asking.

We’ve tried everything before coming to you.

Believe us and offer the help requested (if you can)

Don’t force us to spin our wheels answering a bunch of “why don’t you just do…” questions

Instead of reading that article about the "anti-woke literary scene," read some books from this list that would make those weird dorks shit themselves to death.

Disability Pride flag featuring a muted black background with colored stripes cutting across diagonally from left to right. The colors, from top to bottom, are green, blue, white, yellow, and red.

Happy Disability Pride month, y'all.

If you're disabled, share your links (arts, crafts, books, zines, ko-fi, mutual aid, what have you) so we can share it!

Non-disabled folks, like, share, & buy/donate! Let's uplift some voices and help some folks!

Graphic with a stethoscope and a doctor’s arm, displaying the text 'CLINICAL CARE GUIDE Managing ME/CFS, Long COVID, & IACCs.' The Bateman Horne Center and MERC logos are at the bottom, with a background of a deep blue gradient.

The Clinical Care Guide for #MECFS, #LongCOVID & IACCs is here! Download, share, and use it to support better care. BHC's approach is now freely available—designed to help providers manage complex conditions with clarity & compassion. Download it. Share it. Use it. bit.ly/432YdzF

There’s a deeply unfair cruelty in ME/CFS, in that the more severe you are, the less you can control the amount of PEM you get. Which means you have less power to stop further worsenings.

The further down you fall in the hole, the more you struggle to find ledges to hold onto.

A 10 year old Australian student had a class project where he had to advocate on a policy that was significant to him and his family. He picked Clean Air in Schools.

2/2

Full video also available here:

www.youtube.com/watch?v=iAgN...

ME/CFS Guidebook The guide gives patients, their support network, and medical providers with practical advice on ways to manage a ME/CFS crash, and the art of preventing them.

🌟 The ME/CFS Crash Survival Guide has helped thousands navigate PEM crashes with prep tips, pacing tools & more.

🔋 Download: loom.ly/wwxe9SU
💙 Support more resources: loom.ly/KiU4n_4
@openmedf.bsky.social #MERC #MECFS #PEM

Struggle to leave your home? Finding it challenging? Here's how I manage being (mostly) houserealmed (when my body lets me do more than rest. I'm grateful that I'm sometimes able to craft/enjoy other hobbies: can only imagine how much more challenging it must be for people who are only able to rest)

There is no social justice without disability justice.

We are the canaries in the coal mine. Just about anything that can harm people will hit us harder & faster.

If you centre your activism, pandemic preparedness, social justice movement etc in disability rights? Everyone benefits.