Visual Artist, Tweets from the sick bed, #ME #pwME #POTS #COVID is not over, Eng/Swe, @remissionbiome n=50 participant, poetry @diktgymnasiet
Joined September 2022
- Tweets 10,881
- Following 1,198
- Followers 589
- Likes 95,606
111 Photos and videos
Pinned Tweet
I released an ambient album today if you ever wondered what ME people do all day except being in pain or extremely bored. Sometimes we actually can make something, if we are moderate-severe like me. Took ages and lots of help. Out on all platforms today!
open.spotify.com/album/5G2qT…
1
10
1,202
My neighbor singing karaoke on his own with his windows open, and I can only hear his voice 😅😂 Been going on strong for over an hour.
2
56
Horizontal Views retweeted
Anyone who improved with Baricitinib, how long did it take to notice an improvement? Cheers.
1
5
14
1,308
Horizontal Views retweeted
Jun 11
Lived experience understood as insight and expertise.
2
3
34
551
#Rituximab for #ME results from the two Norwegian studies. The Phase II study had two categories major and moderate improvement. While the first study had just one category for patients getting better. The results are really good! Can’t believe we don’t talk about this more.
3
3
21
914
And just a side note, yes it’s Chat GPT so need to double check with the actual studies for exact results. Still looks really promising I’d say.
1
1
97
Someone out here that thinks that the World Cup is a super spreader event? What are our guesses they will name COVID this time? Right answer only!
1
1
61
Horizontal Views retweeted
English subtitles have been added to the care clinic for people with severe ME and very severe ME in Norway.
youtube.com/watch?v=-KX12ztZ…
1
13
26
1,207
I Sverige är alla privata specialistkliniker för ME nedlagda av olika anledningar, en lades ner efter ett mediadrev av bl.a. SVT. Inga offentliga specialistkliniker för ME existerar, de har lagts ner av både M- och S-regeringar. Vilket är en stor vårdskandal och diskriminering.
Dr. Stingl i Österrike kan inte ta fler ME/CFS- eller långtidscovid-patienter än han redan har, men får 5-20 nya förfrågningar per dag.
Man undrar hur det är i Sverige.
2
4
16
724
* Socialstyrelsens totalt irrelevant och felaktiga rekommenderande och medicinering. Ska det givetvis stå.
1
2
45
Ja vad säger ni? Hade vi accepterat att det såg ut såhär för exempelvis cancer? Vi ser att du har cancer, men vi behandlar ej, vi skickar dig till VC. Eller vi gav inte någon av patienterna diagnosen och vi har därför bestämt att kalla cancer för ”den stora tröttheten”.
4
46
Horizontal Views retweeted
ALT A cartoon of a person drowning in the sea crying "HELP!", while a man rowing safely in a boat responds: "BUT HAVE YOU TRIED JUST IGNORING THE WATER?".
9
154
613
17,697
Horizontal Views retweeted
ALT A cartoon of a man hanging from a branch over a cliff edge, while another man standing safely at the top says: "YOU SEEM AWFULLY OBSESSED WITH THAT BRANCH".
8
255
1,091
17,344
oooooo I got a smaller art grant and a bigger grant as well, my financial situation is solved the coming 3 years!!! the smaller grant covers this summer and the bigger starts in the fall. I only work 25 % and 75 % on sick leave. but the sick leave money is not enough at all.
4
16
403
my escape plan if that happens is I try to move to Norway, but not easy at all to move with moderate-severe ME if course. very very very difficult. but hopefully the left and the semi-left wins the election. we’ll see.
1
1
35