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Sabine Hermisson

@SabineHermisson

May 1

Fatigue bei Kindern: Werden Tausende ihrem Schicksal überlassen?
Tragödie in deutschen Kinderzimmern: Corona lässt die Fälle von ME/CFS unter Heranwachsenden stark steigen. Viele werden zu Pflegefällen. Die Politik zögert.
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berliner-zeitung.de/gesundheit-oek…

"Unsichtbar für die Augen der Öffentlichkeit spielt sich in deutschen Kinderzimmern tagtäglich eine Tragödie ab.
Bereits vor der Corona-Pandemie litten rund 40.000 Heranwachsende an #MECFS. Durch die Pandemie dürften es mindestens doppelt so viele sein.
2/

Die Leidensgeschichte von Kalea (13) begann im Dezember 2019 mit Pfeifferschem Drüsenfieber.
Ein Jahr später infizierte sie sich zum ersten Mal mit dem Coronavirus, im März 2022 zum zweiten Mal.
Der Körper hielt dieser Belastung nicht mehr stand, er kollabierte.
3/

Read 13 tweets

Sabine Hermisson

@SabineHermisson

Dec 30, 2022

@Weber_Nina

Die Spiegel-Journalistin @Weber_Nina berichtet von den Vorbehalten gegenüber #mecfs, die ihr im Anschluss an ihren Beitrag über unsere Tochter Mila begegneten:

(S+) Konfrontiert mit Zweiflern: Die angeblich eingebildete Krankheit spiegel.de/panorama/fatig… via @derspiegel
1/8

"Ein wichtiger Punkt in den Gesprächen mit ihrer Familie waren die starken Vorbehalte, die Medizinerinnen und Mediziner gegenüber dieser Krankheit haben, sie sprachen davon, wie es ist, dass andere hinterfragen, ob es so ein Krankheitsbild überhaupt gibt."
2/8

"Ich hatte ... mich deshalb gefragt, wie es sich anfühlen muss, zusätzlich zu den Symptomen solchen Widerstand von Menschen zu erleben, die einem eigentlich helfen sollten. Nach der Veröffentlichung des Artikels wurde ich dann selbst mit diesen Zweifeln konfrontiert."
3/8

Read 8 tweets

Sabine Hermisson

@SabineHermisson

Dec 21, 2022

#MEAwarenessHour
One year ago, by writing ‘ACT’ (for ‘activism’) on her bed sheets with her finger, Mila asked us to speak and write publicly about her life with very severe #mecfs.
1/7

It was a huge step for a very private teenager and a generous contribution to raising awareness for this horrific disease that is still gravely under-funded, under-researched, and too often dismissed.
2/7

Since I have started to speak up, many parents (or brothers, grandmothers, etc.) from all over the world have contacted me to share the stories of their loved ones.
This has opened a door to a hidden world of suffering and neglect that I never imagined existed:
3/7

Read 7 tweets

Sabine Hermisson

@SabineHermisson

Oct 31, 2022

Since our daughter became very severely ill, I SO wish we could take her to the hospital, entrust her to specialists for her disease, and know she would receive state-of-the-art medical care. But because Mila suffers from very severe #mecfs, we do not have this option.
1/7

For our daughter to have any chance of surviving, we – like many others affected – had to turn into ME experts ourselves. And 24/7 care workers. And fundraisers. And advocates. Why?
2/7

Because this massively debilitating illness – even though not rare and classified by the WHO already in 1969 (CD-10 G93.3) – has been so utterly neglected and underfunded, that it is, still today, one of the most poorly understood diseases.
3/7

Read 7 tweets

Sabine Hermisson

@SabineHermisson

Sep 13, 2022

Living with very severe #mecf 1: Silence

Before Mila became very severely ill with #mecfs, playing the cello was a major part of her life and identity. I loved listening to her playing Bach’s suites while going about my work – until she became too weak so sit upright.
1/8

Today, due to her extreme sensitivity to sound, our house is very quiet. A sign at the door asks visitors to enter softly without ringing the doorbell. We never have more than a handful of guests, no loud talking or laughing, no singing or playing the cello or violin.
2/8

In Mila’s room, total silence prevails. She can no longer speak due to extreme weakness. But also listening to just a few words is too exhausting and causes PEM. Some communication can be avoided by adhering to a strict routine. Plus, she uses finger signs that she developed.
3/8

Read 8 tweets

Sabine Hermisson

@SabineHermisson

Aug 8, 2022

#severeMEDay
50 years ago, my mother became ill with severe #mecfs. She was sent from one physician to the next and so heavily gaslighted that she stopped seeing medical doctors altogether. As a child, I only knew her bedridden in a dark room.
1/16

My mother is one of the strongest people I know. As a young nurse, she set up a mobile clinic in a remote region in Africa with no access to medical care. Back in Europe, seriously ill herself with no treatment, she felt she could just as well have stayed in rural Africa.
2/16

Three years ago, one of my twin daughters, Mila (then 16), became ill with #mecfs. Since Nov. 2021, she has been even more severe than my mother has ever been, fully bedridden in a dark room, too weak to talk or be talked to, needing the little energy she has to just survive.
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Read 16 tweets

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