Mila Hermisson turned 22 last month. She has been lying in the exact same position in a dark room with extremely severe ME for over 4 years. Over 1400 days! In darkness. In silence. In loneliness. With no prospect of medical help. Please watch Mila's short message to the world: youtu.be/hc9m6BJdvJY - ThreadSky

katha1970.bsky.social • 155 days ago

Mila Hermisson turned 22 last month. She has been lying in the exact same position in a dark room with extremely severe ME for over 4 years. Over 1400 days! In darkness. In silence. In loneliness. With no prospect of medical help.

Please watch Mila's short message to the world: https://youtu.be/hc9m6BJdvJY

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katha1970.bsky.social•155 days ago

This footage of Mila with her message to the world, which I am sharing with the permission of her remarkable mother @sabinehermisson.bsky.social, was filmed two years ago, when Mila was already too weak to speak herself, but could still endure her parents saying a few words.

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katha1970.bsky.social•155 days ago

The darkness in the first 12 seconds is part of the film. If they seem like a long time to us, how must Mila feel - every hour, every day?

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katha1970.bsky.social•155 days ago

Please watch the short video and share it. Let's help make Mila's wish to the world, ‘Learn about ME’, a reality and continue to raise awareness for #MECFS and fight together for intensive research and medical care for those kicked out of life by the disease.

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katha1970.bsky.social•155 days ago

So that Mila and the many others severely and very severely affected by #MECFS do not have to spend more years in this unimaginably terrible condition! 🙏

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katha1970.bsky.social•155 days ago

For anyone wishing to know more about Mila and the horrible disease #severeME she and many others around the world are suffering from, please read their family's blog (https://milaandmecfs.wordpress.com) and follow her mother @sabinehermisson.bsky.social

#LearnAboutME

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katha1970.bsky.social•155 days ago

Also please check out this interview of Mila's mother @sabinehermisson.bsky.social in the Austrian format #arsboni on this year's #severeMEAwarenessDay: https://www.youtube.com/live/JnV5N-iYnMc

It is in German, but you can turn on YouTube's automatic subtitle translations for many other languages.

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berlinda.bsky.social•155 days ago

📌

cfsresearch.bsky.social•155 days ago

Can you explain why she has been in darkness and not moving for so long?

autumnsun9.bsky.social•154 days ago

How are you connected to researching this area of medicine but needing to ask basic questions about the disease? I mean this respectfully, not insulting. 🫶

cfsresearch.bsky.social•154 days ago

I'm extremely familiar with the illness, hence the question. Not wishing to insult anyone either. Maybe the article is just unclear, but it seems to be implying that she has been in total or near total darkness for years, which doesn't make sense to anyone who properly understands the illness...

cfsresearch.bsky.social•154 days ago

And the same for silence...What would be the reason for being in *complete* silence and darkness for years, without experimenting to see if they can be tolerated again? Again, it could just be the article is incomplete.

autumnsun9.bsky.social•154 days ago

Any sound, however slight can cause a reaction like a cardiac event that can take days to settle down from. The same for visual stimuli. Many ME patients live in dark, quiet rooms to prevent worsening of serious even critical body functions. See dysautonomia & overstimulation sequelae in ME pts.

cfsresearch.bsky.social•154 days ago

I'm very familiar with it, having experienced all of those. However, the key point is "can". These symptoms tend to come and go, and are influenced by factors such as stress. It doesn't make sense to *continually* avoid stimulation just in case it might cause problems. Otherwise how can you ever

autumnsun9.bsky.social•154 days ago

Any kind of visual or auditory stimulation, however gentle, is overwhelming to the brain & nervous system. It causes a "crash" to body systems such as cardiovascular dysregulation, respiratory distress, temperature drops or escalation, low or high blood pressure, so much more.

autumnsun9.bsky.social•154 days ago

It is an excellent description of what patients and families around the world experience with such a devastating disorder. I hope they and all of us can get the support we need and deserve.

sabinehermisson.bsky.social•155 days ago

Thank you @katha1970.bsky.social for marking Mila's 22nd birthday and for your advocacy for #MECFS!

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