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New website on severe ME

Messages
13
I have created a website on severe ME:

“A Life Hidden is dedicated to those shut away from the world because of the intense suffering of ME (myalgic encephalomyelitis). This site is a collection of my advocacy work, and I hope that it will serve as a resource for anyone wishing to understand more about the illness.

In raising awareness of ME, my greatest inspiration comes from friends and loved ones whose every moment is consumed by the most extreme physical suffering. They are alone and forgotten by the world, but every day demonstrate the most immense courage, simply by continuing their struggle to survive.

Through my writing, I have become less hidden. I want to use my voice to speak for those who cannot.”


www.alifehidden.com

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Mary

Moderator Resource
Messages
17,335
Location
Southern California
It's amazing @Naomi10 I'm in awe of what you've managed to achieve.
@Naomi10, I'm also in awe of what you've done. I just read your section (essay?) on the Power of Listening which was used in a training seminar for junior doctors - wow - extremely well said! A very brief excerpt:

My illness has been devastating, but what has come closest to destroying my spirit has been the way I have often been treated by the medical profession.
 

Seven7

Seven
Messages
3,444
Location
USA
Beautiful Blog, Looking forward to read more, I agree and I am trying to speak up too, and I just posted a video on call to action, we have more power than we realized to control the narrative with very simple little steps. I hope we wake up as a group and move the narrative on the right direction.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
What a wonderful job you are doing! I emailed the link about listening to my stepdaughter is a young nurse, she is going to link some friends who are studying to be Nurse Practitioners who have compassion for me.

We are going to try to get it around the medical school students at University of South Alabama, Medical School. There is almost no knowledge in the local medical community, but I see the younger people coming around a bit.
 
Messages
13
What a wonderful job you are doing! I emailed the link about listening to my stepdaughter is a young nurse, she is going to link some friends who are studying to be Nurse Practitioners who have compassion for me.

We are going to try to get it around the medical school students at University of South Alabama, Medical School. There is almost no knowledge in the local medical community, but I see the younger people coming around a bit.
That's great news. It's so important to educate medical professionals, especially when they're starting out. Thank you for sharing it.