At Christmas, everyone shares their #Christmaswishes/wish lists. I can't celebrate, wasn't even able to properly share my fundraising campaigns, missing my chance. I'm still hoping for a #ChristmasMiracle. gofund.me/2802a23ef (Glasses) gofund.me/d7e05a231 (Mattress) 👇

Für schwersterkrankte #MEcfs Patienten bedeutet das bloße Überleben, tägliche Überlastung #PENE #Crash #PEM, mit dem Ergebnis dauerhafter Verschlechterung... bedeutet: Fortschreiten der Erkrankung. Für die am schwersten Betroffenen mit tödlichem Ausgang. #MEkills

In den kommenden Tagen startet hier auf X die #hilfekettefuerhanna. Ich bin Hanna, 36, und seit Jahren 24/7 bettlägerig mit Pflegegrad 4 nahe Berlin - durch das Ehlers-Danlos-Syndrom und dessen Komorbiditäten. #eds #mcas #mecfs #hopeforhanna

Little things I miss*: Having an Advent calendar & the anticipation of counting down the days until Christmas. There's nothing left to celebrate or look forward to. Every day is darkness and loneliness. *in addition to the great losses #MECFS #severeME #POTS

"Manchmal dachte ich: wenn ich all die Energie, die ich in Formulare gesteckt habe, in unsere Familie hätte stecken dürfen: wie viel leichter wäre unser Leben gewesen?"

RT @DrMichaelScoma: Craniocervical instability (CCI) and atlantoaxial instability (AAI) Craniocervical and atlantoaxial instability can…

me/cfs, POTS, MCAS, etc folks: I've been asked by several people what my Rx protocol is that has helped take me from being severe (bedbound almost 24/7 for about 2 years) to now being closer to moderate (4-6 hours out of bed most days). I've had me/cfs since 2018. I've been a patient at the Bateman Horne Center for a few years now, and this is everything they currently have me taking. It's obviously custom tailored to me, and what works for me isn't going to work for everyone, and I'm incredibly fortunate that I can afford all the over-the-counter stuff they tell me to take, which is ghastly expensive. In addition to everything listed below, I have a chest port through which I receive a liter of saline every morning, which helps greatly with my POTS.

I've wanted to collect donations for aid for years, but for various reasons I never did. I didn't accept any help. Then I decided to do it. But apart from 2 times, I couldn't share in Christmas month. I missed the years best opportunity, but I just didn't have the strength.

I've been wanting to write short posts for months, but I always fail. I was thinking of individual posts about the little things I miss in life. Not the big things, the small ones. I can think of plenty about autumn/ Christmas. I almost missed them. That's something I miss too.

RT @Daniisfeiliab: Manche Leute wollen einfach immer noch nicht verstehen, dass sie nur einen Unfall, eine Krankheit, einen Schicksalsschl…

Wünschte es gäbe irgendein Medi gegen die höllischen Schmerzen im Crash 😭 #PEM Die Nervenschmerzen in der Leiste kann ich betäuben, aber gegen #MECFS Gliederschmerzen hilft absolut fcuking gar nichts. Es ist unerträglich. Und alles nur weil ich baden musste. #Hygiene #severeME

Schon wieder Todesnachrichten von #MECFS Patienten in meiner Timeline. Weiterhin Schweigen von den Verantwortlichen.. 🖤#RIP Megan Pendleton aus Virginia🖤@MECFScomrade Seit 2019 litt sie an schwerer ME & Co, die Erkrankung schritt unerbittlich fort. Unerträgliches Leid...💔