Solve ME/CFS is a nonprofit that supports scientific research and physician and caregiver education on ME. Patients benefit from its research grants and free educational newsletter and webinars. I like keeping up with research developments and learning names of scientists who are interested in exploring ME. Without a new generation of researchers and clinicians focused on ME, we will lose the little progress we’ve made in the past decade. SolveMECFS.org has a large website, so I’ll narrow it down to the most useful parts: patient resources, whose audience ranges from those who don’t know what ME is to those who’ve lived with it for years, and scientific initiatives, including links to a patient biobank registry and patient narratives for medical professionals. This resource has been added to my list of resources for patients with ME or fibromyalgia. With Solve ME/CFS, you can get involved in advocacy campaigns or simply learn more about your diagnosis. If there are other resources you’d like me to share, let me know in the comments! 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.
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Want a new prayer to pray for yourself or for someone who has a chronic illness? Use these two prayers from the book A Year of Prayer: Lord Jesus, you are the Lord of our bodies and our souls. Teach us to care for the bodies you have given us, and remind us that they are temples of the Holy Spirit. Keep both our souls and bodies safe from all harm and danger today. In your name we pray. Amen. O Great Physician, your forgiveness brings us the healing we need. Yet so many remain afflicted with sickness and disease. Strengthen doctors, nurses, and all who care for the sick, that they may use the skills you have given them to bring comfort and relief. Encourage all who are ill with your presence and love, that they may put their trust in you. Amen. 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.
A mother’s love is an art more beautiful than any piece hanging on a wall or standing on display. It includes self-sacrificing concern for the emotional and physical needs of her children, no matter their age or ability to reciprocate. Mothers who care for their children with chronic illnesses and disabilities have a demanding role that I share my appreciation for every day. Thank you, mothers! My mom, who is just like me but better and taller, believed in my illness from day one, advocated for me in front of dismissive doctors, cooked my meals and did my chores, pulled me off couches when I couldn’t get up, and read pages from my memoir draft, and that list barely skims the surface. Thank you, Mom! Give your mom a hug, phone call, or whatever token of love and appreciation she wants today. 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.
One benefit for me of my state’s stay-at-home order is that I don’t need to worry about what my face looks like. For someone who has battled acne for nine years, that’s a time-saver and confidence booster. I might put a dab of blush and lipstick on if there’s a work video call, but otherwise, I put on acne treatments and makeup only when I really feel like it. Usually I don’t really feel like it. After weeks of diet experiments to counteract any food-caused acne in January and February, the only food I’m still limiting is peanut butter. All together, it feels great. It probably looks better than I think it does, too. Good thing the latest acne treatment I was trying was cheap enough to be laid aside without guilt: resveratrol from The Ordinary from ULTA Beauty. 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.
I received, from another writer with a chronic illness, a list of venues for disability-related writing. Check them out. Not only can publishing your writing be therapeutic, but it is also a powerful way to spread awareness of the experiences of people with disabilities. Don't be afraid to share your voice.
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. The shelter-in-place order has its consequences for our social, emotional, and financial well-being, but a benefit of it is its opportunity to experience what life is like for those who have chronic conditions that leave them homebound. Such patients are used to decreased socializing, decreased financial and community resources, and increased isolation and loneliness. The current period is nothing new for them. They’re used to doing whatever it takes to maintain what health they have. Plus, they stay sheltered for months or even years, long enough for their careers to be ruined and their friendships to fade. We trust the coronavirus sheltering in place will be temporary and try to use this time to do the things we normally don’t have time to do. Why not also take this time to understand the needs of people who are usually homebound? Why not also take this time to show these people you care? If you have a chronic condition that is isolating, now is your chance to share your experiences with the world. Share this post or share your own experience. Stay at the top of others’ social media feeds. Make your voice heard! On the other side, we could see a brighter future for people with chronic illnesses and invisible disabilities. Let’s make a positive change! 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. Have you been belittled for having an invisible chronic illness, and have you tried treatment after treatment for adult acne? I said yes to both and read two articles this month that were both reassuring and informative. The first, from the March issue of Women’s Health, profiles eight women with chronic illnesses, including polycystic ovary syndrome and fibromyalgia, and their self-advocacy. “Owning It,” by Alison Goldman, can be read here: https://www.alisonmgoldman.com/womens-health-march-2020-owning-it The second is better if skimmed because it’s a medical journal article. However, it’s full of facts about diagnosing and treating, both with pharmaceuticals and with complementary (nondrug) approaches, acne in women. The article by Drs. Tan, Schlosser, and Paller can be read here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986265/ We stand to gain much if we advocate for ourselves and make informed decisions about our own health care. 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.
“Let nothing dim the light that shines from within.” —Maya Angelou Bonus quote: “See the light in others, and treat them as if that is all you see.” —Dr. Wayne Dyer 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.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.
Did you know it's Invisible Disabilities Week? If not, now you know and can share the news with others. How visible an illness or disability is does not determine its severity. Millions suffer not only from invisible disabilities and illnesses but also from others' misunderstanding. You can change that by:
Darla Nagel is a biomedical copy editor 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{a}gmail.com.
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