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My M.E. artwork/blog/etc is online!
#pwME

YESTERDAY I ATE SUGAR

FOR THE FIRST TIME IN 7 YEARS
AND IT MADE ME SLEEP 3 HOURS LESS

www.lifeinoneroom.com/posts/yester...

#poem

Hey check out my new blog if you want to read about life as a disabled chronically ill person. Isn't that interesting to read about so say!?

www.lifeinoneroom.com

I wrote a poem about Lars Norén, Jon Fosse, Coronakommissionen investigation, and the Swedish failed pandemic strategy, published at my new blog-as-artwork!

www.lifeinoneroom.com/posts/lars-n...

“I’m not worried about Long Covid”

Of course you’re not. Most people weren’t worried about it, until it happened to them

This is true of most disabilities. People think they’re the exception. That we’ve done something “wrong”. It’ll be different for them

Disability can & does happen to everyone.

Best medication for moderate-severe ME/CFS so far after 7 years of trying: Tramadol. Doesn’t get talked about enough. Perhaps it could be an idea for LongCovid as well?

Not well but allows for a better quality of life.

#mecfs #longcovid #tramadol #me #lc

This goes for everywhere, ie Sweden where I live. Please, the left everywhere, do exactly this!

Florence Nightingale had M.E. that’s why she was a genius.

Prata med någon som kan denna sjukdom… Den här artikeln är inte tillräckligt insatt i ämnet… Den riktiga skandalen i Sverige är att alla specialistklinker för ME/CFS är nedlagda. Granska det istället? Och nu ska vi inte ens kunna få privatvård eller vad menar ni?

An Artist Expands the Landscape of Sound In a major show at the Whitney, Christine Sun Kim shines light on Deaf culture and measures sonic experience beyond the ear.

Great article

www.nytimes.com/2025/02/14/a...

„Sick Text” invites us on a journey to unearth the foundational frameworks of language; exploring and creating other ways for our senses and neurological circuits to be nourished and communicated.
– Jenny Richards

As Diktgymnasiet describes it, ‘my writing was sick, just as I was’. They had to ask themselves, ‘if reading and writing isn’t a cognitive possibility, what does this mean for the artist-writer?’

„Sick Text” meditates on the world Diktgymnasiet now inhabits and the whole scale change they have gone through since living with chronic health problems. In sickness, language, the foundation of their art practice became unknowable, lost, out of reach.

„Sergantis tekstas / Sick text”. Diktgymnasiet | KKKC Sausio 31 d. 17:30 val. pradedama eksponuoti Švedijos kūrėjo, pasirašančio slapyvardžiu Diktgymnasiet, paroda „Sergantis tekstas / Sick text”. Ji – apie tai, kaip pasikeičia gyvenimas, susirgus lėtine...

Sick Text - Diktgymnasiet, KKKC, Lithuania

01.31 - 03.02

www.kkkc.lt/lt/exhibitio...

Funded by the European Union, Goethe-Institut, The Swedish Arts Grants Committee, Kulturbryggan, Nordic Culture Fund, Opstart and Nordic Culture Point

@konstfvastmanland.bsky.social @madamecryptica.bsky.social

Hopepunk Article Talk Hopepunk is a subgenre of speculative fiction, conceived of as the opposite of grimdark. Works in the hopepunk subgenre are about characters fighting for positive change, radical kindness, and communal responses to challenges.

I just bumbled into the name of a genre called “Hopepunk” when looking up one of my favorte authors, Becky Chambers … and in addition to they learned she has published more books than I realized. YAY!

(“The long way to a small angry planet” is very good)

The billionaires want you all to be divided to keep the heat off of them.

This nightmare will all be over on the day that working people unite and realize that’s it’s YOU vs. THEM.

My son started daycare at just shy of 4 months in May 2024. He’s had roseola, Covid, strep and at least 5-10 colds in the last 7.5 months. As flu and RSV cases start to increase again, I’m paranoid about him getting sick again. I’m wondering how much a baby’s immune system strengthens once they been in daycare for over 6 months and have already had numerous sicknesses. At 11 months now, he has had the first flu shot but pending his second dose. No RSV vaccine (doctor didn’t recommend it). RSV and flu scare me the most

Herd immunity is so antiquated. Hello 'daycare immunity'.

In Iceland, on Christmas Eve, people give each other books so they can spend the evening drinking cocoa & reading. It’s called, Jolabokaflod, the Christmas book flood. I’ve never been more in love with Iceland than I am right now ♥️♥️

Same

In my experience people with disabilities are often some of the kindest, smartest & most resilient people you will ever meet - because they’ve known suffering & they’ve learned compassion. Compassion for themselves and for others. /15

So that’s obv. very different to a study. Nevertheless I’m interested in learning more about it.

Thanks I look into it more. People that have been treated in Norway before this trial happened got better, around 1/3 of the patients of Dagfinn Ogreid. As told by the doctor. He didn’t do a study though. It’s his estimate. I discussed with a fellow Swede who was there and got better.

Yes 100%

Yes it’s a bit scary for sure. Damm… I was thinking this might be something to hop on to. Now I’m not as sure anymore. But I spoke with a fellow Swede with ME who got his entire life back ok this drug. Like… 😭

Yes I saw this one also. But the results didn’t mean that nobody in this study didn’t get better on it. Some still had improvement on the drug. And a couple had a lot of improvement. The adverse effects are a bit scary though of course.

Wow ok thank you I didn’t know that. Hmm. Yes I know. It’s so frustrating we’re such a heterogeneous group! Things that might make us better might also make us decline permanently. So hard to navigate this. When is it worth it to try something that could potentially make things worse?

Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study Background Chronic fatigue syndrome (CFS) is a disease of unknown aetiology. Major CFS symptom relief during cancer chemotherapy in a patient with synchronous CFS and lymphoma spurred a pilot study of...

Is the #ME and #LongCOVID community gonna hop on the #Rituximab train? 🚂 The data doesn't look to bad actually. Not sure why not more studies have been done on this, and why not more people have gotten access to trying it. Anybody with experience of this medication?

‘I was in denial about it’: actor Matt McGorry on having long Covid Orange Is the New Black and How to Get Away With Murder star speaks about the disease and another way of looking at health

”The science is really clear that getting Covid over and over again is not good for anyone. It feels like where the climate movement was like 10 years ago, where the scientists were saying things and people were not really listening.”

theguardian.com/wellness/ng-...

Which are the best articles about the ongoing pandemic and why it still is a good idea to take every precaution possible? I'm trying to educate a friend.

#covid #longcovid #me #pandemic