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Hochsen

@hochsen.bsky.social
120 followers 281 following 10 posts

I got a virus, I didn’t die, but I never recovered. That was years ago. I have ME (me/cfs). Miss a lot that I have lost. Profile picture from favourite band: Mono (monoofjapan)

PostsRepliesMedia
Reposted by Hochsen
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
While there are horror stories from many countries, the Netherlands and Sweden really stand out. They might be very "civilised" in some respects, but on ME/CFS they seem to be in the Dark Ages.
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Aparna Nair @disabilitystor1.bsky.social · 14/08/2026
when covid started, and I was alarmed by the growing public acceptance of and tolerance for openly eugenicist rhetoric about disabled, sick and vulnerable people, I said as much, repeatedly, and loads of academics and doctors told me I was overreacting and hyperbolic (subtext: hysterical)
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Adam @abrokenbattery.bsky.social · 31/05/2026
Post exertional malaise (PEM) is the hallmark symptom of #MECFS It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms. Short video explainer - triggers, symptoms, and management. Repost for the last day of #MEAwarenessMonth
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Tom Kindlon @tomkindlon.bsky.social · 25/05/2026
Credit to themsbloke. A high-energy video that might require pacing! He has multiple sclerosis himself rather than ME/CFS. Note that the F word is used. #MEcfs #PwME #MyalgicEncephalomyelitis
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Adam @abrokenbattery.bsky.social · 30/04/2026
“She actually asked me a couple of times, you know, am I going to die? She felt so unwell.” Isla is 10 and developed #MECFS after a COVID infection. She is 95% housebound and just wants to “have fun and do things with her friends”. From BBC Lifeline: Action for ME
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Hochsen @hochsen.bsky.social · 09/04/2026
Jag får också blomemoji / annan emoji för vårdcentralen kan tydligen inte kommunicera utan att infoga nån emoji i alla meddelanden. Får också ett grattis på födelsedagen. Men får väldigt lite förståelse för min sjukdom då de är totalt okunniga om ME. Får skadliga råd o förslag men ingen vård ö h t.
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Catesby Holmes @catesby.bsky.social · 03/02/2026
Since ICE got to Minneapolis, 5-year-old Vera has a new hobby: setting traps. “All bad guys are trying to take dark skin people like my friend,” Vera said. “So I try to keep them safe.” @setharichardson.bsky.social on how kids, parents, and schools are handling the upheaval of ICE violence.
rewirenewsgroup.com
‘Bad Guys Are Taking Mommies and Daddies’: ICE Upends Minneapolis Kids' Lives
In Minneapolis, parents must figure that out, while teachers face half-empty classrooms as students stay home for fear of abduction.
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Bruce Springsteen @brucespringsteen.net · 29/01/2026
Oh our Minneapolis, I hear your voice Singing through the bloody mist We’ll take our stand for this land And the stranger in our midst Directed by Thom Zimny Edited by Thom Zimny and Samuel Shapiro Production Footage: Pam Springsteen and Thom Zimny
youtu.be
Bruce Springsteen - Streets Of Minneapolis (Official Lyric Video)
YouTube video by Bruce Springsteen
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Hochsen @hochsen.bsky.social · 28/01/2026
Jag var också där. Samt nästa dag när vi gick till ett nytt hus, började bygga scen och baka bullar. Första gången jag greps av polis. Första gången en polis hånflinade åt mig, jag såg säkert rädd ut när jag tittade på hans tårgasgevär.
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Hochsen @hochsen.bsky.social · 20/01/2026
My most common phantom smell is cigarette smoke, second is mixture of gasoline and exhaust smell. I so much prefer the very rare smell of cinnamon bun baking.
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Hochsen @hochsen.bsky.social · 05/01/2026
And make notes to help you set and keep the agenda as the doctor loves talking about useless stuff and wastes the time
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Hochsen @hochsen.bsky.social · 05/01/2026
My Fitbit have a new way of informing me of how broken my health is. #MEcfs #PwME #ChronicIllness
Fitbit watch with display falling off
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Chronic Illness Humor @chronicillness.bsky.social · 08/11/2025
@wonder_cripple When you say be positive to a disabled or chronically ill person, you're not saying it for their benefit. You're saying it because their their discomfort makes you uncomfortable and you don't wanna hear it. Stop lying to yourself.
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Hochsen @hochsen.bsky.social · 04/11/2025
I am lucky that I often can handle sounds so I can still listen to music. Sometimes my ME illness kills it though. And when I can the emotions and sorrow is hard to handle. I miss concerts so much. #ME #MECFS
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Chronic Illness Humor @chronicillness.bsky.social · 24/10/2025
@LINGUA IGNOTA -  HAVING A ANCADODXIC BODY *ABSOLUTE BULLSHIT* -HAS CONSTANT NEEDS DOESNT DO WHAT YOU WANT -OUTSIDE LOOKS WEIRD INSIDE IS EXPONENTIALLY WORSE -FEELS VERY BAD EVERY DAY -MUST LUG SAME ONE AROUND THE WHOLE TIME -CONSTANT DECAY MUST WATCH IN HORROR -EA IS FINAL SURPRISE
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Tatiana Trifan #FBLC @tatianatrifan.bsky.social · 26/09/2025
Some in the Swedish medical community insist on using GET/CBT for post-viral illnesses. Do not get fooled by CBT in the name. It is based on the pseudoscience of BPS model, a revival of hysteria. Some doctors published in The Medical Journal some pseudoscience. themeinquiryreport.com/2025/09/26/p...
themeinquiryreport.com
Pseudovetenskaplig trend sprids av Läkartidningen
Carl Sjöström, läkaren som intervjuades i Svensk förening för allmänmedicins podd SFAMpen om funktionella symtom, skriver nu i Läkartidningen på samma tema tillsammans med kollegorna Arwa Josefsson…
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jessamyn-ann.bsky.social @jessamyn-ann.bsky.social · 18/02/2025
Here I’m doing a live demonstration of what it’s like to live with POTS (or other forms of OI) using my Lumia. We look fine on the outside, but this is what’s happening inside. Remember blue is my HR and gray is blood flow to my head. Note: Lumia is not a medical device. #wearlumia #pots #mecfs
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Tom Kindlon @tomkindlon.bsky.social · 01/09/2025
"about a new ME clinic which claims to use & follow the Canadian diagnostic criteria, but instead through a loophole uses persistent physical symptoms/functional somatic symptoms" Screenshot from latest Science for ME weekly update #MEcfs #CFS 1/
Sweden Disturbing discovery by patient advocate "the ME inquiry report" who in a series of three articles writes about a new ME clinic which claims to use and follow the Canadian diagnostic criteria, but instead through a loophole uses persistent physical symptoms/functional somatic symptoms.
Articles 1 2 3 (automatically translated into English) l Thread
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Chronic Illness Humor @chronicillness.bsky.social · 28/08/2025
We're all just one moment away from a different life. One diagnosis, one crisis, or one accident away from a completely different life. Life doesn’t ask before it changes, so this is just a reminder to not take your health or physical abilities for granted.
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FunkisHen @funkishen.bsky.social · 26/08/2025
This is so validating. Please watch and share. #PwME #SevereME #NEISvoid
youtu.be
070 - Why ME/CFS "fatigue" is not normal fatigue
YouTube video by Jarred Younger, PhD
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The Guardian @theguardian.com · 06/08/2025
Scientists find link between genes and ME/chronic fatigue syndrome
theguardian.com
Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community. Early findings from the world’s largest study into the genetics of the condition pinpointed eight regions of the human genome that were substantially different in people with an ME/CFS diagnosis compared to those without the illness. Continue reading...
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Hochsen @hochsen.bsky.social · 23/07/2025
This is the cover (released this year) of the war pigs song that I mentioned on twitch today. You really should watch the video. I promise you’ll like it! www.youtube.com/watch?v=8kVY...
youtube.com
uKanDanZ - WAR PIGS (Official Music Video)
YouTube video by ukandanz
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Atlas Shvitzed @therafischwartz.bsky.social · 02/07/2025
Have been losing my mind all morning at this absolutely bowel-crushing Franco-Ethiopian jazz-funk cover of War Pigs. Holy shit. www.youtube.com/watch?v=8kVY...
youtube.com
uKanDanZ - WAR PIGS (Official Music Video)
YouTube video by ukandanz
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Hochsen @hochsen.bsky.social · 18/06/2025
Hot om nekad sjukpenning. Hot om ny arbetsförmågeutredning som garanterat orsakar försämrad hälsa minst i flera månader. Det finns ingen botande behandling o den specialistmottagning för ME som fanns stängdes pga beslut i landstinget. Men känns som det är vårat eget fel att vi sjuka o ej förbättras
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Hochsen @hochsen.bsky.social · 18/06/2025
Önskar Försäkringskassan kunde respektera att det är min fru som ska kontaktas (registrerat hos dem) då jag i min ME-sjukdom ej klarar kognitivt att hantera den typen av samtal. Men nej - de ringde mig med en massa svåra frågor. Känner mig anklagad, misslyckad o rädd. Gråter o skakar.
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Chronic Illness Humor @chronicillness.bsky.social · 11/06/2025
a person holding on to the side of a pier with weights tied to her

...no one knows how close I am to drowning
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Hochsen @hochsen.bsky.social · 11/06/2025
Beklagar. Jag sökte sjukersättning efter fem års heltidssjukskrivning. Avslag med motivering att jag skulle kunna må bättre i framtiden. Hur vet jag inte då vi som ME-sjuka inte får vård. De beviljade dock fortsatt sjukpenning. Ett år senare är jag minst lika sjuk o vård existerar inte.
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Julie Houston @julesahouston.bsky.social · 12/05/2025
Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot
Square text box with blue background. Text in white saying Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no  progress, no treatments, no cure.  It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot
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Maggie Boxey Writes @maggieboxey.bsky.social · 15/04/2025
My talk is now available to watch! Please watch, share, comment- all the things <3 #mecfs #millionsmissing #chronicillness #momsky #disabledsky youtu.be/JzKfi8LOMQU?...
youtu.be
I Am One of the Millions Missing | Maggie Boxey | TEDxOjai
YouTube video by TEDx Talks
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Richard Vallée @richardvallee.bsky.social · 21/03/2025
Oops. Turns out that bullshit may work on people, but it doesn't work on reality. Decades of bullshit doesn't work any better either. The belief that rehabilitation must work here has been just that: a belief. A blatant, fraudulent lie. It never worked. They knew that. They didn't care.
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SC Freiburg @scfreiburg.com · 25/01/2025
Das beste Bild des Tages. #NieWieder ❗️
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George Monbiot @georgemonbiot.bsky.social · 18/10/2024
This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...
theguardian.com
Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot
Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot
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Tom Kindlon @tomkindlon.bsky.social · 24/07/2024
#neisvoid #chronicillness #chroniclife #ChronicPain #Spoonielife #hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie #ChronicallyIll
Nia | The Chronic Notebook
@chronicnotebook
That chronically ill person you know
has probably never answered a "how
are you" honestly. They probably
told you "it is what it is", laughed and
trivialised their pain because their
real answer was long, traumatising
and intense and they didn't want to
make you uncomfortable.
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Brian Hughes @bmhughes.bsky.social · 18/10/2023
It's that time of year again! Today I look at the history of so-called "Medically Unexplained Symptoms" with my students (part of our #pseudoscience class). Migraines? Rooted in "perfectionism" Ulcers? "stress" AIDS? "shame/guilt" MS? "childhood trauma" Tropes now recycled for #MECFS & #LongCovid
Lecture slide with quotes claiming that migraines are caused by psychiatric issuesLecture slide showing information on stomach ulcers and how they are not caused by stressLecture slide with quotes claiming that AIDS was caused by psychological factors, with original article in which these quotes appearedLecture slide with quotes claiming that multiple sclerosis is caused by early childhood trauma and lack of positive bonding experiences, with original source (from 2002)
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