There's some "disruption" over on twitter about this. My take: 1. I understand why people resort to these protocols 2. I don't doubt some #pwME have responded well. I also know #pwME have had significant setbacks... #MyalgicEncephalomyelitis #MillionsMissing #GreatestMEdicalScandal

Who wants to tell @slate.com #PACETrial #MyalgicEncephalomyelitis #MEcfs #pwME #MillionsMissing #GreatestMEdicalScandal

I'm happy to see Emerge Australia work on improving access to care for Aboriginal & Torres Strait Islander #pwME There are surveys at this link and contact details for ATSI & CaLD community orgs. Please share! #MyalgicEncephalomyelitis #MEcfs #MillionsMissing emerge.org.au/news/strengt...

I appreciated this 😅 #pwME #MyalgicEncephalomyelitis #MillionsMissing

People w/ severe ME are well practiced in the discipline of surviving for the sake of survival, of caring for bodies that may never “get better.” In a world of climate collapse & ecocide where *most* ecosystems are becoming sick & disabled, it’s a discipline we should all be practicing.

This is the full quote. @medscape.com doesn’t mention ME/CFS once in the article. How this should read instead: Post-exertional malaise (PEM) is the hallmark of #MECFS, a condition found to affect at least 50% of those with #LongCovid. Why this matters🧵

Obvious cases of ME/CFS being labelled only as as Post-COVID is not only erasure, but also harmful. The people affected miss out on some crucial PEM and severity specific info. (Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)

Pediatricians should be acquainting themselves with #MEcfs, dysautonomia/POTS, and MCAS - some of the most common outcomes in Long Covid. PEM (and PENE) were coined for MEcfs/ME - an illness that extends back centuries under various names and iterations. (And a reminder that...

Those are actually the hallmark features of ME/CFS. Medicine has completely botched everything dealing with ME/CFS for decades, has refused thousands of opportunities to do better about it. And yet again it has been botched so completely that the past doesn't even exist, erased from existence.

Bring back earnestness and sincerity as virtues...

I am so grateful for the honesty and vulnerability of #pwME who share their personal stories. It gives others the courage to speak and reminds us that we are not alone in this reduced and often painful experience of life. #MyalgicEncephalomyelitis #MillionsMissing

When will people learn that a company won't love you?

People with ME/CFS are the antithesis of quitters. To keep showing up and choosing life and trying to find ways to be more alive in the face of immense physical and societal challenges is courageous, disciplined, and heroic.

The school curriculum should include the teaching of *Genocide* under which the Holocaust is one event amongst other examples all across the world including Australia, America, Africa, Bosnia, Burma, India and so on and on and on and on...

This, then, is the human problem: there is a price to be paid for every increase in consciousness. We cannot be more sensitive to pleasure without being more sensitive to pain.~Alan Watts, 𝘛𝘩𝘦 𝘞𝘪𝘴𝘥𝘰𝘮 𝘰𝘧 𝘐𝘯𝘴𝘦𝘤𝘶𝘳𝘪𝘵𝘺

How can we get people to become conscious of the fact that there is a disease that they don't know exists that will absolutely destroy your life, help is nonexistent and you'll be screaming into an abyss for the rest of your torturous life if it takes you down by a roll of the dice. #MEcfs

- A school day should be 5 hours max and not start before 10am. - Essential food items (bread, milk, eggs, vegetables) and medicines should be govt subsidised. - All household appliances/electronics should be built to last 10 years min. If they fail within 10 yrs you get a free replacement.

It shouldn't be niche, but the moment private property was invented and land became owned by individuals and corporations, universal basic income became a human right, and every day since it has been unethical to not implement UBI.

Remembering that Suzy Weiss wrote an awful piece "Hurts so good" about invisible chronic illnesses and " online spoonie-ism". Fucking awful person.

3. There is NO ethical use of the planet-destroying, disinformation-spreading, fascist-enabling, billionaire-enriching plagiarism machine.

How can we get people to become conscious of the fact that there is a disease that they don't know exists that will absolutely destroy your life, help is nonexistent and you'll be screaming into an abyss for the rest of your torturous life if it takes you down by a roll of the dice. #MEcfs

Do you all think it’s inhumane to leave people rotting in bed (literally, not metaphorically)? Im talking about people who cannot tolerate light and sound, and maybe even touch. People who can’t drink or chew on their own. For decades. If so then you should look up Myalgic Encephalomyelitis.

The truth of the matter is: anyone you know living with ME/CFS is one of the bravest mofos you know Abusive assholes don't have the strength of character and heart to be able to endure an illness like this; they'd crumble within their first week of having it.

I know I’m not really here much (I check messages/notifications though), but I wanted to share the gofundme of someone in the ME community. This is urgent life or death. I don’t have much energy to promote this, but I hope you all will take up the cause: gofund.me/8da0ebb46

Honestly sometimes I get why people have a hard time believing people with #MECFS. The mechanics are so ridiculous. “What do you mean the vibrations from a car ride can crash you?!?”

if you really knew what moderate--severe--very-severe ME/CFS was like, you would be screaming on our behalf. you would not stop screaming. there are no social supports and no medical treatments. the situation is so much more dire than you can possibly imagine

A couple of years ago I was in touch with a journalist and I tried to pitch to her the story of Alem Matthees, the work he had contributed to uncovering the PACE trial fraud and how he had become more devastatingly ill in the process. I also said we needed someone asking the hard questions to...

People with mild ME/Long Covid & people who have recovered, please start advocating for the most severe instead of mildwashing the disease & using your story to sell your personal projects while feeding the media narrative of “individual overcoming” 🙏

Would there be actually any time at all deemed "right" to finally look at us? For media and medicine to say MYALGIC ENCEPHALOMYELITIS without bias, shame or minimisation? #pwME #GreatestMEdicalScandal

It's 2025, 6 years into a pandemic that has caused an epidemic of new cases of #MECFS. There have never been so many advocacy orgs and quality resources available to inform on MECFS. And still, media pieces that mention #MyalgicEncephalomyelitis are misinformed and incorrect. #pwME

I had taken a break from posting, and that Guardian article is a really good example of why. I can't handle that the main avenue to connect with other pwME & researchers, and keep up to date on current affairs is via this little anger box in my hand. Out of patience. 0 tolerance for ME misinfo.

Very unfortunate that this article shares misinformation on ME/CFS. Additionally, "ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection". link.springer.com/article/10.1... #pwME #MillionsMissing #LongCovid #MyalgicEncephalomyelitis

#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...