#SciArtSeptember Day 9: vanishing • The term #MillionsMissing is used for #MECFS advocacy since most people with the disease—like myself—rarely have energy to leave their homes. My #Sciart #embroidery body map (2016) illustrates the invisible symptoms I experienced at the onset of ME/CFS.

Great thread. Some researchers and clinicians are *using* us - using the language, protocols, and our shared knowledge, without acknowledging #pwME or their peers that preceded them.

It's really fucked up the news media at large is searching so hard for humanity in machines, while systematically denying humanity to Palestinians, trans people, immigrants, and other persecuted people

If you are joining the March for Australia on 31 August, you are walking with Nazis.

Bateman Horne also have a great series on PEM, including information on studies showing the physiological process at work demonstrating how pwME respond to activity youtube.com/playlist?lis...

It’s unspeakably demoralizing to lose your agency to a disease & then to have your voice/experience/energetic sacrifices devalued too. I’m so grateful to everyone who has fought so hard over the years & I also understand why people stop trying & go silent

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

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

⏰️⏰️⏰️ #pwME This survey closes in a couple of weeks!!!! Your input into the new 🇦🇺 guidelines is needed! It's open to everyone. #MillionsMissing #MyalgicEncephalomyelitis #MECFS #GreatestMEdicalScandal

Today it’s time to launch a big project I’ve had the privilege of working on: A Quiet Storm—an online art gallery showcasing the artwork of people living with severe ME/CFS. 1/7 www.aquietstorm.me #MECFS #pwME #OnlineArtGallery #AQuietStorm

Trying to stay connected to others - including other #pwME - to avoid falling further down a black hole of isolation... yet having nothing to say and no energy to say it anyway.

⚠️Attention #pwME Scoping survey for Australian Clinical Practice Guidelines for ME/CFS consultations.nhmrc.gov.au/clinical-pra... Open to everyone so I encourage #pwME & carers outside 🇦🇺 to provide input if they are able! #MyalgicEncephalomyelitis #MECFS **Please repost**

I usually do quite well managing my emotions and grief, but today I've just been completely overcome by loss. I hate ME. It takes everything. (I'll probably delete this, I just needed to get it out).

@nosuchthingshow.bsky.social Good pod on "Why are slurs making a comeback?" I feel it was a missed opportunity to not speak to the people currently on the receiving end of these slurs - like disabled people. Would definitely have brought a different perspective to the idea that...

⚠️Attention #pwME Scoping survey for Australian Clinical Practice Guidelines for ME/CFS consultations.nhmrc.gov.au/clinical-pra... Open to everyone so I encourage #pwME & carers outside 🇦🇺 to provide input if they are able! #MyalgicEncephalomyelitis #MECFS **Please repost**

ME/CFS patients have been neglected for decades. Our rights have been and continue to be violated. We are constantly gaslit by medical professionals and other institutions that should be helping us. 1/11 #Photography #pwME #MECFS

1 in 22 infections. And while many people have now heard of Long Covid, most people don't know about #MyalgicEncephalomyelitis or how life deciminating it can be. #GreatestMEdicalScandal #pwME

The NIH recently published a study: one of every 22 covid infections triggers ME. People are not being warned that their whole life could just vanish. Journalism literally exists for situations like this. #JohnVsJonVsME #GreatestMEdicalScandal 💗💝💕💝💗 www.livescience.com/health/coron...

Terms like “can’t give in” and “ME didn’t beat me” are so misleading and unkind. (Not blaming the person w/ME.) We all pushed and tried hard, probably a lot longer than we should have. People who get better are lucky. It’s not from trying harder.

Today is not a date to celebrate. I live on unceded Aboriginal land that belongs to the Whadjuk people of the Noongar Nation. Always was, always will be. Artwork by Rhyia Dank.

#pwME if you are in need of some comfort today✨️🥹 ⬇️

Another pw #SevereME at risk of sectioning which *will* cause decline, and maybe death. If there is a doctor based in Denmark that can intervene here, please do! #MEcfs is not a psychiatric illness and I can't believe it still needs to be said. #pwME www.thecanary.co/global/world...

My sister & my nephew are in town & it's so hard being at home while they go to the museum, the beach, & do other things. It's lovely to see them, but even after short visits I'm left feeling so ill. Sometimes it's easier to exist in my bubble of isolation. #pwME

The week night hobbies stopped. The weekend fun stopped. Then weekends were spent in bed recovering from working all week. Then I had to lie down during the work day. Then I was in bed by 5.30pm. Then I couldn’t sit at my desk. Then my body gave out. Now I have severe M.E. #PwME #MECFS

⬇️ Onset can be gradual. You can just feel like something isn't quite right and put it down to other things... Then another infection can come along, or surgery, or accident, or vax... and you can be thrown into the depths of #SevereME

Hey #pwME, particularly those houseb/bedbound - what are some nice little things you try to do for yourself - either daily/weekly/monthly or just when you can manage it - to try and make life bearable and give yourself something to look forward to? Looking to create some new rituals this year ✨️

If the CDC did their job in the 80s and actually investigated the outbreaks of "CFS", maybe there would have been warnings of the potential consequences of post acute sequelae. And maybe we'd have treatments too... #GreatestMEdicalScandal #pwME youtu.be/AW0x9_Q8qbo?... #MEcfs #MyalgicE

Hey #pwME A reminder to make sure you subscribe to Broken Battery on YouTube and like his videos. He makes these videos purely with his own tools, and also pays professionals for the voiceovers from his own pocket (& he's got #SevereME). #GreatestMEdicalScandal #MEcfs #MyalgicEncephalomyelitis

The history of #MEcfs is fraught with sagas however the story of Ampligen and the hope that was given (and promptly taken away) is ME *lore* #GreatestMEdicalScandal Here's a great article about one #pwME 's experience: www.newyorker.com/culture/pers...

When you are housebound with ME, live alone, have almost no support, and the few friends you have are enjoying their summer holidays... Trying to work out who I can ask to pick up my meds and whether it's too much to ask if they can also get me some eggs. These are my mundane & ongoing worries

In case you weren't aware, Australia is still flogging a dead horse on exercise for ME/CFS. Survey for when you have the brain space/energy/patience ⬇️ #pwME #MillionsMissing #MyalgicEncephalomyelitis

“We shall have spring again” MEssages of hope & solidarity for #pwME from doctors & researchers theredtreeandme.substack.com/p/we-shall-h... #MECFS

Around this time of year, I try to be thankful since it was only a few years ago that I was bedbound & so much sicker... But going from bedb ➡️ houseb is still not enough. We deserve treatments that enable us to participate more fully in life, not pace through our days. #pwME #MillionsMissing

Anyone else feeling daunted by the prospect of a new year? No, me neither 😬

🚨 Nevra needs £4,300 by Dec 31 or her surgery will be canceled! www.gofundme.com/f/save-nevra 🚨 Plus $2,954.46 for rent or be homeless www.paypal.com/paypalme/Sav... She’s a severely disabled homebound young woman who escaped domestic abuse, no local orgs will help, this is an emergency

Well I feel a bit battered and sore today and PEM will be incoming - BUT I got to put a dress on, spend Christmas at my friend's, and lay horizontally out in the afternoon sun 🌞 #pwME know how special even small things like this are ✨️

✨️Merry Christmas, #pwME & other friends.🎄 I keep forgetting to spend time over here! There are still lots of friends over at the other place, so I'm still there quite a bit. I hope your day is the best it can possibly be ❤️ If you happen to watch anything good, let me know 🎞

I was first diagnosed with fibromyalgia because my initial most prominent symptom was body aches & joint pain. I was told to keep exercising, but my usual walking, yoga/pilates was feeling so much harder than usual. I'd recently had surgery so thought maybe I was just taking a long time to...

Hannah Sharland @thecanaryuk.bsky.social is doing the very best reporting on people living with #SevereME worldwide. This piece is about @madelinenerd.bsky.social who has been living with ME for decades and is facing the prospect of MAID. #GreatestMEdicalScandal #pwME #MyalgicEncephalomyelitis

I know lots of #pwME say that they decline in winter, but the temperature here has been above 33 degrees all week (today was 40.4 degrees) and I am ABSOLUTELY WIPED OUT. I'm not sure I can survive climate collapse peeps.

This might sound obvious but I'm not sure it actually gets said enough. How can people improve, or recover, when there is no medical care? I say this to remind #pwME not to be so hard on themselves, including me. #MyalgicEncephalomyelitis #GreatestMEdicalScandal #MEcfs

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@lifeatthewindow.bsky.social @nikosuvisto.bsky.social I remembered I posted this on Twitter this year! (From Fallen Leaves) 🎞🎞🎞

PEM/PENE is the hallmark of #MEcfs The basis of what we know about it comes from ME research and the experiences of #pwME shared over years and decades... #MillionsMissing #MyalgicEncephalomyelitis

There are people in their homes and in their beds in quiet darkness all around the world. #pwME enduring severe suffering under all circumstances, including war. Very few acknowledge the scale of this hidden pandemic. An inconvenient truth. #GreatestMEdicalScandal #MyalgicEncephalomyelitis

Remembering Refaat Alareer. 23 September 1979 – 6 December 2023 #FreePalestine #EndGazaGenocide #CeasefireNOW #Gaza

#pwME in 🇦🇺 If you know a physician well-versed in #MECFS (they are unicorns - I don't know one) please encourage them to put in an EOI for the working group developing the new clinical guidelines. NHMRC have asked The RACP for nominations (which is a concern...) www.racp.edu.au/expressions-...

I've signed this petition as it seems the ME Association (UK) have forgotten who they are advocating for. They are increasingly out of touch, their board does not understand the severity of ME or what life is like for #pwME without support. They can do much better! www.change.org/p/me-associa...