From The Australian: "600,000 patients risk losing care over $220k grant". A bit on the current state of things for #pwME in Australia. #MyalgicEncephalomyelitis #MEcfs #GreatestMEdicalScandal
PZ
@itsmepz.bsky.social
Music 🎶 Film 🎞️ Hot Chips 🍟 Happiest by the sea 🌊 Forever exhausted #pwME Living small with ME on unceded Whadjuk Noongar country ("Perth, Australia")
It is as simple as that. There is no grey area or nuance needed. #GreatestMEdicalScandal #pwME #MyalgicEncephalomyelitis
emily fraser 🌿🐌✨@emilyesfraser.bsky.social · 9mo agoIf you’re not fiercely protecting patients from the devastating declines caused by post-exertional malaise & repeat infections while demanding exponential increases in biomedical research funding, I’m not interested.
I have no grace for the author of that book. People are always happy for #pwME to be thrown under the bus and treating our harm as collateral damage. If you can't tell the raw factual story about #MyalgicEncephalomyelitis then you are burying the truth and hurting us. ##GreatestMEdicalScandal
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
Unknown Etiology@viralpersistence.bsky.social · 9mo agoI read the part of the born free document titled “anxiety, isolation and phobia“ and can confirm that the reddit poster isn’t misrepresenting this section by calling it brain retraining. #mecfs #LongCovid
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...
Strengthening culturally inclusive care for people with ME/CFS and long COVID – Emerge Australia
emerge.org.au
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🧵
Billy Hanlon@bhanlon15.bsky.social · 11mo agoMedscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know' '...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..' www.medscape.com/viewarticle/...
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!)
Billy Hanlon@bhanlon15.bsky.social · 11mo agoMedscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know' '...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..' www.medscape.com/viewarticle/...
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...
Billy Hanlon@bhanlon15.bsky.social · 11mo agoMedscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know' '...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..' www.medscape.com/viewarticle/...
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.
Billy Hanlon@bhanlon15.bsky.social · 11mo agoMedscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know' '...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..' www.medscape.com/viewarticle/...
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
Niko Suvisto@nikosuvisto.com · 11mo agoIt has been one year since I started sharing more openly about my life with severe ME/CFS. I chose to do it through my photography, resulting in my ongoing series ‘Enduring: Life with Severe ME/CFS’. 1/10 #MECFS #pwME #Photography #SelfDocumentary
When will people learn that a company won't love you?
The Washington Post@washingtonpost.com · 11mo agoThe grind culture that birthed many Big Tech companies from Google to Amazon is back. As the AI race heats up, startups are promoting hardcore cultures like “996,” or working 9 a.m. to 9 p.m., six days a week.
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...
Zach Weinersmith@zachweinersmith.bsky.social · 11mo agoDo you have any extremely niche, but serious, ethical stances?
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
The Real McCoy@rippermd41.bsky.social · 12mo agoThere’s also #MECFS 1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life. Only 25% of us can work. The severest are too sick to leave their house and/or bed. The absolute worst are tube fed, unable to tolerate light, sound or touch.
- 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.
Zach Weinersmith@zachweinersmith.bsky.social · 11mo agoDo you have any extremely niche, but serious, ethical stances?
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.
The Spaceballs Argument for Unconditional Basic Income (UBI)
There is an argument frequently made against the concept of unconditional basic income (UBI) that essentially goes like this: "Life requires work. You can't just expect to live without work, and it's ...
scottsantens.com
Remembering that Suzy Weiss wrote an awful piece "Hurts so good" about invisible chronic illnesses and " online spoonie-ism". Fucking awful person.
Prem Thakker ツ@premthakker.bsky.social · 11mo agoUPDATE: Per our scoop last night, Suzy Weiss, sister of Bari, did indeed appear on CBS this morning to talk about her recent article in The Free Press. Second Free Press writer on CBS this week. Read more on staff concerns on The Free Press's presence inside the newsroom: zeteo.com/p/inside-bar...
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
The Real McCoy@rippermd41.bsky.social · 12mo agoThere’s also #MECFS 1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life. Only 25% of us can work. The severest are too sick to leave their house and/or bed. The absolute worst are tube fed, unable to tolerate light, sound or touch.
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.
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...
emily fraser 🌿🐌✨@emilyesfraser.bsky.social · 12mo agoPeople 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” 🙏