|
Maybe you liked the 80s, but I'm sure you don't want federal research funding for a disease that affects more than 1 million Americans to be like it was in the 80s. Check out this video from #MEAction: https://youtu.be/B5mw45nE6Qg #NotEnoughforME #pwme Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
0 Comments
To mark #MillionsMissing and my tenth illness anniversary, here are the second five of ten things I would have done if I had not developed myalgic encephalomyelitis. If I had remained healthy, I would have
 Learn more about life with ME in the book Lightening the Shadow. Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to enlighten health care professionals on patients' experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
Ten days before #MillionsMissing and seven days before my tenth illness anniversary, I’m reflecting on ten things that I would have done if I had remained healthy. Here are the first five. If I had remained healthy, I would have
Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to receive quarterly updates from her, sign up by emailing darla.nagel@gmail.com.
The millions of myalgic encephalomyelitis patients missing out on life need millions more in research funding. Tell that to the director of the National Institutes of Health (pictured below) here. Much as I like the song "A Million Dreams," it's "gonna take" more than dreams to improve patients' lives and unravel the cause of this disease. Learn more about myalgic encephalomyelitis here.  Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
Myalgic encephalomyelitis patients from seven countries sent recordings of themselves singing the chorus of "Blowin' in the Wind" so that another patient could produce a parody of the song. Hear our (yes, I'm one of the singers) protest against flawed theories and research and insufficient funding and understanding of ME. Thanks to all who participated. Here's to the power of music! Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
One ME activist has turned to libraries to spread ME awareness. Cindy Downey has donated copies of the award-winning documentary Unrest, and in this article I wrote for #MEAction, she shares her advice for donating. Thanks, Cindy, for inspiring me to donate a copy of Unrest locally!
Tell me what you want to do this year in the comments. Together, we can spark change. Here’s to progress in 2018!  Photo: Blondinrikard Fröberg, Flickr Creative Commons Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
2017 has been a year of progress for ME/CFS patients. We’ve done more to inform government officials and citizens about the severity and reality of ME. Research funding is still insufficient and a cure still elusive, but I’m encouraged by the following events this year:
Merry Christmas, and may next year bring better health to everyone with a chronic illness or invisible disability!  Photo: Kent Landerholm, Flickr Creative Commons Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
The documentary Unrest, which won an award at the Sundance Film Festival, is now screening across the world. Much has been written about the ME illness experience, but until people see it (and come close to feeling it with the virtual reality version), they're unlikely to understand exactly how devastating this disease is. Watch the trailer here: https://www.unrest.film/trailer. See where Unrest is showing here: http://see.unrest.film/showtimes/  Jen Brea, subject and director of Unrest and cofounder of #MEAction. #TimeForUnrest Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
For #BedFest, a virtual concert by ME patients, and to commemorate my eighth “illness anniversary,” I read from my memoir, Lightening the Shadow. Here's the opening: I don’t feel tired; I feel like I body slammed a brick wall, not as much in the pain as in the “Ugh, I can’t move or think now” sensation. I feel like I’m five decades older than I am. I feel like I’m unplugged in the dark. I didn’t think it in those words, but that’s what I was feeling as I combed my wet hair in the YMCA locker room after one of my hour-long swims. What I actually thought was Maybe this is more than a cold. I’m whipped, and my legs are sore, even though I didn’t swim as hard today. Swimming rarely made me sore, even after the two-hour-long practices I’d done on the high school swim team. Instead, swimming usually rejuvenated me mentally and physically. I consider it the best form of exercise, and it’s my favorite form because of water’s calming and cooling effect. Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
|
Author:
|
RSS Feed