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

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...

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 (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

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.

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

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.

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

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.

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!

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...

🌟 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.

Anyway, cis people challenge to stop thinking of nonbinary as some sort of third gender that is half of the other two options. Gender is chaos and we exist inside and outside of it, often simultaneously. The binary doesn't exist to us. We are as infinite as stars in the sky.

If you live in Melbourne and have been thinking, what's a small but achievable way I could do something GOOD? please consider being a healthy control in this trial!

Excited to launch 2 new virtual support groups for carers in April 2025 - one for adults, one for school-aged kids. Join our supportive community to share experiences and find connection. Join us! 🤝💙 🔗 vist.ly/3my2k4k

Please take the time to read and amplify this. It is too often left to folks with Severe ME to support and amplify each other.

Me, laying in bed, slurring my words from exhaustion: I don’t get it, I didn’t do anything Husband: Really? *bemusedly lists multiple non-physical things I totally did* 3yrs into being very ill & I’m still struggling with societal expectations of what “doing something” is 😑 #longcovid #mecfs

🛑 #Reparations #CollectiveCare #MutualAid #AntiRacist (put $ where our mouths are, right? fellow white folks, leftists? 🫶🏼) If TEN people send me $10, we can buy this mobility aid for our friend so she can access her kitchen! If you have the means, please step up 🧵

The AEC doesn’t appear to be on Bluesky but I’m still going to copy paste my election notes that I’ve shared off the back of their posts on other channels. Remember, it’s a disability accommodation to postal vote.

The solution to being bedbound is not getting out of bed. It's not bedlaze = Choice. It's bedbound = Cannot get up. The solution is making someone as comfortable and functional as possible *in* bed.

jupiter wishes you a very happy trans day of visibility 🏳️‍⚧️

Postal vote form: forms.aec.gov.au/PostalVoteAp...

Excellent and devastating excerpt from an article on Long COVID in kids. We need more awareness about how devastating psychosomatic misdiagnosis is. “'Listen, it's all in your son's head, he has something called FND’ […] Numerous long COVID patients have reported being misdiagnosed with FND… (1/2)

It's never too late to start masking, or to upgrade the quality and protection levels of your masks.

Good news, Brisbane! Soon, eligible donors can donate blood to the AusME Biobank for important ME/CFS and long COVID research. Eligible AusME Registry participants in Qld, watch your inbox. If you're not a member yet and want to contribute, sign up now at https://www.emerge.org.au/ausme/

If you’re struggling right now, know that it’s ok to take a break. If you’re flaring more than usual, your body may be telling you that you need a rest. Being online offers excellent companionship, info & connection… but the unrelenting news cycle drains precious energy we need to fight back

We need medical research funding for long covid and ME. We need NHS services that can manage symptoms and prescribe experimental medications. We need care, understanding and health professionals to be trained in ME. www.bbc.co.uk/news/article...

UK: Dr. Alexis Gilbert, 41, from Burley in Wharfedale in West Yorkshire, caught COVID in July 2022 and still suffers from fatigue, pain, and brain fog. Long Covid affects the daily lives of 1.5 million people in England and Scotland. Source: archive.md/hGQzp

Appreciate that Vic dept of health has reverted to stronger masking messaging, dropping minimising limitations (see today’s advice vs Dec 2024 advice ⬇️) Pls share this official health dept advice

These awareness days serve an important purpose but they can be so hard. Please take care and know that we think you are an absolute rockstar- whether you managed a protest, shared on social media, told your story, or today you were only able to survive...you are valued. #LongCovidAwarenessDay

A study showing nasal sprays can prevent COVID has been retracted. Personally I see nasal sprays as an additional layer, but I would not rely on them for prevention. Wear a well fitted respirator & add in a nasal spray if accessible (or saline nasal rinses). Don’t rely on nasal sprays alone

#LongCovidAwarenessDay Two years ago I did an interview with @statnews.com about living with #LongCovid. The disease is dynamic, so the details of my experience aren’t quite the same but I am still in my bed. Give it a read, if you’d like! www.statnews.com/2023/01/09/l...

This Long Covid Awareness Day, let's look at why people believe they don't know anyone with Long Covid. We are in the middle of a mass disabling event that most people refuse to acknowledge. When we face the truth & stop denying reality, we can save lives:

This #LongCovidAwarenessDay I’m reflecting on how many people have been let down by governments, public health & medical establishments How Covid has been downplayed, airborne spread ignored & vaxx and relax strategies pushed for the sake of capitalism How many have Long Covid because of this? 🧵

Australia: Plum Stone, a healthy 38-year-old, first contracted COVID in March 2020 with mild symptoms. Over time, she developed heart issues, brain fog, and numbness. She was reinfected in Nov 2022, worsening her POTS. 5 years later, she still struggles with neurological and cardiovascular problems.

🤖 Android here we come! Spread the word! Share this far and wide—yell it from rooftops, tell your rich uncle about it, slip it into casual conversation at the grocery store.