Calling all #NEISvoid, and all #MedSky folks. I have a series of questions I'd like to ask and would love if you could check out the thread and spread the word so we get good responses. This is a thread where you CAN reshare every part if you like, because each poses a different question ❤️🧵

I kept this one really quiet, because Zionists will gleefully harass and intimidate children, but a few months ago I won an Inspiring Australia grant to organise a science family fun day event for refugee kids from Gaza as part of National Science Week. 🥺💜🧪

CDC employees told me the shooting at CDC was much worse than initial police reports suggested. More than 40 bullets hit buildings. “It’s a miracle more people weren’t hit,” said one staffer who was locked down in a building for hours last evening.

The most severely affected are too sick to appear on camera - way too much exertion. They live in the shadows, in dark rooms with closed doors & are the least able to advocate for themselves. They really need strong allies campaigning for research, better care & treatment. #SevereME

Severe ME Day – 8th August – is dedicated to raising awareness about severe ME and remembering those who have lost their lives to this disease. Estimates suggest that around 25% of individuals with ME suffer from the severe form. Read more: bit.ly/SevereMEday25 #SevereME #SevereMEDay

An autistic woman with impeccable manners is actually just petrified of displeasing you, it has been confirmed.

Thrilled to share that I posted this selfie to Twitter and caused a former chief economist from TD bank to tank his own career ❤️

Safeguarding records for the final year of Maeve’s life show social workers, nurses and a mental health assessor, instead of focusing on managing Maeve’s ME, were investigating concerns about Boothby. (£) www.thetimes.com/uk/healthcar... #MEcfs #LongCovid

2) First, there is the sample size: 15.000 participants dwarfs any other ME/CFS study in comparison. Try finding biomedical ME/CFS studies with more than 1000 participants: there are almost none...

1) Saw some skepticism about DecodeME, asking if it is overhyped. As an account that focuses on critically analyzing research (our name was 'ME/CFS Skeptic' for a reason!), we think it’s the real deal. Here are a couple of reasons why it stands out. 🧵

no paywall full story full story archive.is/2025.08.09-2...

Pride in being autistic is not denial for me, it’s defiance against the systemic racism those living at the intersectionality of it too! A system that tried to erase us, pray the autism away, and therapies that can ‘fix’ or ‘cure’ us & narratives that saw only tragedy! 🌺

I know Bsky joke about no post editing and 'be proud of your typos.' But rubbing my face in my ADHD tendency to typo, and making me choose between wasting spoons deleting and retyping a typo post, or annoying my autism by leaving up a post that is WRONG, on a regular basis... I'm not a fan.

Thank you from the bottom of my heart @natashadevon.bsky.social this means so much to the #MECFS community and am sending you so much 💙 #UnitedForME #SevereME #LongCovid #LBC

massive thanks to @natashadevon.bsky.social @lbc.co.uk for tonight's segment about the #DecodeME GWAS study and asking how #pwME feel about its findings (identifying eight genetic markers for ME) also appreciated my message being read out, esp. given the lack of #DecodeME media coverage in Australia

From X: @Rose_Mary_X 🚨!!PLS SHARE & TAG #pwME !!🚨 Natasha Devon phone-in TONIGHT on @lbc.co.uk 7-8pm Re: @decodemestudy.bsky.social asking; ‘Were you told it was in your head, and if so what do these findings mean to you?’ Tel/WhatsApp 0345 606 0973 SMS 84850 #MECFS #MyalgicEncephalomyelitis

Yesterday’s Channel 5 News spoke to David Spencer, father of Kara Jane, who recorded music from her bed while living with severe ME. She passed away at 32. Her posthumous second album In Limbo was released for #SevereMEDay. #MECFS

Just signed this petition. A hospital ward is no fit place for a person with severe ME. Hope the NHS will take Dill’s needs into account asap. #MEcfs #MyalgicE #pwME #severeME chng.it/4stnKqWn4w

Important distinction: They don't want to track autism--they want to track autistic people

This has been my lived reality for 32 years in this one room. Severe #ME. No treatment because there has been no serious research funding. The psych/behavioural lobby make sure of this despite ample proof of physiological damage. How many more generations will live in dark rooms alone and ignored?

Thank you, Ezra! For folks who have ME or LC or think they may, the Pacing Guides and the Mayo Clinic Proceedings Concise Clinical Review: 1) www.meaction.net/resource/pac... 2) www.mayoclinicproceedings.org/article/s002...

THIS! "the world I want to live in protects the most vulnerable and marginalized people in it" I've always done my best to fiercely advocate for anyone experiencing discrimination and disadvantage #SevereME now demands all of my extremely limited energy just to stay alive #pwME need your support

At its most severe, people with ME/CFS may not be able to stand, sit up, speak, or even eat. Imagine being stuck in your bed for years on end, while doctors shrug. That is the reality for people with severe ME/CFS.

If you would like to make a donation, these organizations advocate and do research on severe ME/CFS: - MEAction www.meaction.net - Open Medicine Foundation www.omf.ngo - Solve ME solvecfs.org

If you like reading: - Read Julie Rehmeyer's book Through the Shadowlands - Read Laura Hillenbrand's A Sudden Illness www.newyorker.com/magazine/200...

If you like videos: - Watch Jen Brea's documentary Unrest: www.youtube.com/watch?v=XOpy... - Watch Anil van der Zee's The Days with ME www.youtube.com/watch?v=SYLM...

Today is Severe ME/CFS Awareness Day. If you aren't familiar, ME/CFS is an utterly debilitating, usually life-long condition with no approved treatments and often, no medical care. me-pedia.org/wiki/Severe_...

A secret DWP report on disabled claimant suicides has finally been released Thank God for Disability News Service and its perseverance in uncovering this suppressed DWP report - otherwise the public would be none the wiser. www.thecanary.co/uk/news/2025...

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.

From David Tuller @davetuller1.bsky.social DecodeME pre-print reported eight "genetic signals" involving immune function and the nervous system in people with ME/CFS. Many viewed the findings as of potential significance. One person did not. virology.ws/2025/08/07/t... #MEcfs #PwME

On Severe ME Day, we remember the millions of people living in darkness. To help shed light on their struggle please share the new publication 'Supporting people with severe & very severe ME: a resource guide for clinicians' tinyurl.com/y6mc9m7u

"Today we honor the sickest among us. The ones who have been least lucky among some of the least lucky people on earth..." A Moment of Silence for Severe ME/CFS Patients by @DafoeWhitney: ow.ly/QrCt50WBCZZ #MEmomentOfSilence #UnitedForME

Just a reminder that this is still very much accurate and relevant. Even when the EHRC publish the Code of Practice, which does not change the actual law.

If you'd like to support the researchers behind #DecodeME with other projects eg #SequenceME www.clinicalresearchnewsonline.com/cln/pressrel..., here's donation link www.decodeme.org.uk/support-us/ Alternatively donate directly to Prof Ponting's #MECFS research donate.ed.ac.uk/support/ME-C... #CFS

Strange that #DecodeME was on the front page of the Guardian today and was reported in all the major UK newspapers but it hasn’t yet been mentioned on BBC News: www.theguardian.com/society/2025...

From Brent's mom: Brent worked with OMF. He is now severely ill and house-bound. He can’t read or write. He can barely communicate but wanted to share this message with other patients.

What if there were already some sort of contest where people were able to choose between them, I wonder how that would go

tell me about it, tiny aloe plant on the counter at the cafe near my house

RFK has announced that he is developing a vaccine against all viruses. Yes, every single one. The whole, uh, "phylum"

incredible 🧑‍🔬 'Sweet potato DNA is extraordinarily complex. While humans have 2 sets of chromosomes [...] sweet potatoes have 6. This condition, hexaploidy, made deciphering their genetic code like trying to reconstruct 6 different, yet similar, sets of encyclopedias that have been shuffled together'

Rowling's 24/7 commitment to being an absolute nightmare ghoul is sort of extraordinary. She has every option in the world for how to spend her life and she commits herself entirely to hatred and self-righteous mean-spiritedness; some are more effective at evil but nobody puts in the hours like her.

The Australian privacy commissioner has said the transfer of millions of patient X-rays and other scans by Australia’s biggest radiology company without consent was a ‘case study of good privacy practice’ www.crikey.com.au/2025/08/01/i...

TL;DR The genes found to be associated with #MECFS in the DecodeME study are associated with: ✨autoimmune conditions ✨innate immune response ✨response to viral infection ✨mitochondrial disorders ✨neurological disease ✨inborn errors of metabolism ✨pain/nocioception ✨cellular integrity/autophagy✨

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... 🧪 🧵

Yeah this... I'm seeing more "this place is dead" and "nobody talks to me here" posts again. Honestly, I'm tired of trying to tell these people that nobody owes them engagement. Asking "how do I get people to talk to me" is the wrong question. Talk to people. *Be* the engagement you want to see.

Kennedy Curse Sure Taking Its Sweet Time With RFK Jr.

For #ME/CFS, genomics assessed in >15,000 indviduals with 8 genomic loci identified. "Validation of ME/CFS as a biomedical condition and an important corrective to psychologizing ‘all in the mind’ perspectives on the disease” www.science.org/content/arti... www.research.ed.ac.uk/en/publicati...

The best time to get political was a decade ago. The second best time is now

I have #SevereME I struggle to even sit up to stand/walk is difficult I lie in bed 24-7 always in pain always struggling to care for myself I live alone without support yet I'm far from unique we're the #MissingMillions we exist, just barely but you don't see us please, open your eyes #UnitedForME