SWAlexander
Senior Member
- Messages
- 2,054
because there is no routine care for ME/CFS in the system, but felt "in charge" of me as a person and were willing to give treatment that made sense in my case to make it possible for me - against immense hurdles! Doctors and a therapist who not only helped me to get therapies but also carried and endured me and my illness when I had no strength and unimaginable symptoms. In search of therapy, under conditions for #MECFS severely affected, we found only one offer, far away in the north. I was brought about 800km under sedation to Schleswig-Holstein to be allowed to do an immunoadsorption. I was also lucky that the doctors there took me seriously and listened to my story and included my own suspicions about my symptoms in their therapy evaluation.
As a result, according to my clinical picture, my neurology department also prescribed #Fycompa, which helps me with my brain symptoms and gives me more energy. I was incredibly lucky to get such support, unfortunately this is an absolute exception, because #mecfs is trivialized by most doctors and classified as psychosomatic. Most patients do not receive adequate medical care. That was also the motivation of my helpers: to show that even the most severely affected can receive treatment if the system adapts accordingly.
That needs to change! The disease can already be treated in constellations like mine and the health system must be aligned accordingly by those responsible, even for the most severely affected among us, who for the most part continue to disappear without any medical care (#millionsmissing)! I would like to once again express my infinite thanks to
@BrockAnnaDr
@GrandeBettina , team of Schleswig-Holstein,
@C_Scheibenbogen, Dr T. Kees, Dr R. Eichholz and
@malteserDE . May you be rewarded for your charity in this life and the next
As a result, according to my clinical picture, my neurology department also prescribed #Fycompa, which helps me with my brain symptoms and gives me more energy. I was incredibly lucky to get such support, unfortunately this is an absolute exception, because #mecfs is trivialized by most doctors and classified as psychosomatic. Most patients do not receive adequate medical care. That was also the motivation of my helpers: to show that even the most severely affected can receive treatment if the system adapts accordingly.
That needs to change! The disease can already be treated in constellations like mine and the health system must be aligned accordingly by those responsible, even for the most severely affected among us, who for the most part continue to disappear without any medical care (#millionsmissing)! I would like to once again express my infinite thanks to
@BrockAnnaDr
@GrandeBettina , team of Schleswig-Holstein,
@C_Scheibenbogen, Dr T. Kees, Dr R. Eichholz and
@malteserDE . May you be rewarded for your charity in this life and the next