explore | Grilled Cheese

Bei mir passt zufälligerweise die HRV Rate sehr gut zum Bell-Score, hat das noch jemand?
Also z.B. HRV 50 = Bell 50.

Immer wenn ich denke, meine HRV habe ich endlich aus dem Keller, geht es wieder runter.
Meine Medikamente habe ich alle angepasst und teilweise reduziert, es ändert nichts.
Langsam mache ich mir echt Sorgen, dass es doch eine dauerhafte Verschlechterung ist.
#MECFS #HyperPOTS

“If we weren’t so ill, those of us with this awful disease would be shouting it from the rooftops.”

Eleanor Dent describes being largely housebound with #MECFS, from difficulties getting benefits to harmful advice, and still no treatment after 24 years.

(3/3) This spin poisoned the well against critics of the #PACEtrial, so I had to address it in detail with the information tribunal that sided with my FOIA request. It was well received and they agreed the assessment of #MECFS activism in relation to the #PACEtrial was "grossly exaggerated" (p40).

(2/3) The Science Media Centre (UK) ran an organised campaign for "seizing the agenda", "frame the narrative", and "engineered the coverage" (p12). This resulted in numerous hyperbolic articles about alleged harrassment of #MECFS researchers which conflated it with valid criticism of the #PACEtrial.

(1/3) @georgemonbiot.bsky.social is far more deserving of winning a prize for his journalism on the #MECFS scandal than whatever award was given to another journalist for literally just reporting a curated narrative handed to him by the Science Media Centre (UK) as part of their organised campaign.

en.wikipedia.org/wiki/Myalgic...
Due to the #MECFS I got up at about 2.30 am German time yet, showered, washed & blow-dried my hair.
BP 120/76, body temperature 35,4°C/95,5°F.
Outside it cooled down to 17,9°C/64,2°F in SW Germany by 4 am.
Happy furry early #Furriday meowing.
💖💖💖

I went outside today, sat and watched a school event for 30 minutes. First time I've sat outside in 7 months. I definitely feel tired but not crash tired yet. Feels like a big win. #mecfs #longcivid

今日は三角コーンをお届けします😃

筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。

#ブルーフォトチャレンジ
 #筋痛性脳脊髄炎
 #笑顔の花びら集めたい
 #5月12日
 #mecfs
#bluephotochallenge

The preprint "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of #MECFS and #LongCovid"
now has over 100 votes in the Popular Preprints of the Decade Award voting. You can vote for it and others daily until 11/30/2026. @renegaderesearch.bsky.social

when i make plans I tend to forget I have ME/CFS and when I remember that I have ME/CFS I don’t wanna make plans anymore.

#mecfs #thefutureisscary

Ich hab nix zu essen
keine Medikamente
keine*n Ärzt*in
keine Pflegestufe
keine Mobilität
kein Geld für Sterbehilfe
was wollt ihr mir noch wegnehmen?
Jepp, die Wohnung als Nächstes.
#IchHabAngst und #MEcfs

“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.”

@georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.