Darla Nagel
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Lightening the Shadow

New Study on Epstein-Barr Virus and Human Herpesvirus 6 in ME/CFS

6/9/2022

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Here's a new study on the role of Epstein-Barr virus and human herpesvirus 6 in ME/CFS, specifically by altering germinal center and extrafollicular antibody responses. I copyedited this. It has a helpful Graphical abstract (explanatory diagram). See the full article here: https://insight.jci.org/articles/view/158193

It is wonderful to see more research coming out on ME. This is the second such study I have copyedited this year.

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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Copyediting ME/CFS Research and Where to Find the Newest ME/CFS Study

5/10/2022

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I finally got to copyedit a research study on ME/CFS! Dr. Maureen Hanson and her team published a study on metabolism in patients with ME before and after two days of strenuous exercise in the journal I copyedit for, JCI Insight. Read it here. I’ll summarize what I took away from reading the article multiple times. Direct any questions to the article authors, not to me, because I am not a scientist or clinician.

Glutamate and vitamin B3 metabolism differed between patients and healthy controls, but there was no evidence for overall hypometabolism. In female patients, the data showed a gradual altering of something called the plasma metabolome resulting from exercise stress. There may be less passing of electrons through mitochondrial membranes in patients. Overall, exercise recovery is impaired in patients.

I am grateful for any research published on ME, and to my mind, the only positive result from the pandemic is the heightened interest in ME research because of the similarities between long COVID and ME. I look forward to my next opportunity to copyedit an ME study for JCI Insight.

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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Start Mindfulness and Start Healing with Breath Awareness or Yoga Therapy

2/3/2022

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Breath awareness, which is as simple as noting whether you’re breathing out or breathing in, is the foundation of yoga therapy, as I learned from interviewing yoga therapist and educator Veronica Zador. Read the interview published in Natural Awakenings here. Breathing is also the foundation of yoga and a requirement for mindfulness and for the heart/mind connection in health.

I think breath awareness is the reason I feel strong and feel connected to my body when I swim and sing. You have to breathe to avoid drowning! You have to breathe to make vocal music audible and controlled.

So, stop reading and clicking for 10 seconds, and notice whether you’re breathing in or breathing out. That’s your first step toward better health.

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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Getting Pain out of My Way

1/5/2022

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For too long, I've let pain affect my functioning. Whether that pain was from joints, muscles, or frequent sinus headaches, I can no longer let that pain get in my way when there are things I can do to reduce the pain. So, my New Year's resolution is to do what it takes to stop pain from holding me back. I don't have many specifics for modalities that I will try this year that I have not tried before, but I am open to new possibilities. 

I hope you will join me as well. No one deserves to live with chronic pain. I hope that this will be more successful than last year's resolution to greatly reduce my sugar and gluten intake!


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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Read about the Allure of Quack Medicine

8/30/2021

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When dealing with disease, our desperation for improvement can lead us to quack medicine, junk science, snake oil…choose your poison. It’s not a new problem, so why does it continue? According to Tim Harford in “Why Phoney Medicine Has Such Lasting Allure,” “I cannot help but draw a broader political lesson from the long history of demand for quackery. When we feel that things are not going well and that experts have been unable to help, we seek more speculative remedies, even if we do not expect much. When those remedies fail, we become more desperate, and we keep searching. There is always another charlatan around the corner.”

Read the full article on quack medicine here.

One quack told me my disease was in my head. Another quack (at the University of Michigan!) told me being more positive would help. A third prescribed me about a thousand dollars’ worth of supplements — I was swallowing 13 tablets a day — that did nothing, leading him to prescribe me aloe juice.

Quackery is a vicious cycle. Don’t be swallowed by it or swallow everything healthcare professionals give you.

Supplements Darla takes for ME
What I take today: a far cry from my previous 13-tablet-a-day ritual

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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When Doctors Leave You for Retirement

8/2/2021

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I’m facing the retirement of two helpful physicians and knowing their replacements will be different in their approach to my illness. I am concerned about my care, especially if I have a relapse. I am grateful for all the ways these two physicians, known in my book as Dr. Three and Dr. Special, have helped me. I wish them a blessed retirement yet wish they could remain in the field for patients like me.

A patient has to be assertive with, provide a timeline of illness events and tests to, and review records from physicians. I did all three with these two doctors after negative experiences with previous physicians. The patient/provider relationship is vital. There is a crucial need for physicians with knowledge of ME/CFS care, especially in light of the increase in cases of long COVID, or post-acute sequelae of COVID.

If you’re a budding health care professional who wants to know more about ME/CFS, email me! If you want additional lessons learned from chronic illness, email me so that I send them your way!

Man using wheelchair assessing accessibility
Photo: Province of British Columbia, Flickr Creative Commons
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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Easy Dairy-Free Baking Recipes Tried for 2021

5/3/2021

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Can you bake on a dairy-free diet? Can you bake on a vegan diet? Yes and yes. Baked goods will still turn out without eggs and milk with a few substitutions. Here are three recipes I’ve made a few times: cranberry orange muffins, maple granola, and unbelievably vegan brownies.

Cranberry Orange Muffins (Vegan)
Makes 6 jumbo muffins. Adapted from Healthy Living Market.
  • 2 cups flour
  • 2/3 cup sugar (or a mix of granulated sweetener and sugar)
  • 2 tsp baking powder
  • 1/2 tsp baking soda
  • 1/2 tsp salt
  • 1 cup orange juice
  • 1/3 cup applesauce with 1 Tbsp oil
  • 2 Tbsp orange zest
  • 1.5 teaspoons vanilla extract
  • 1/4 tsp almond extract
  • 1.5 cups fresh cranberries, roughly chopped (or 1 cup dried cranberries and 1/2 cup diced orange)
Heat oven to 375. In large bowl, mix dry ingredients (except cranberries). Make a well in the center and add liquid ingredients. Mix just until wet ingredients are moistened. About halfway through mixing add the cranberries.
Fill muffin tins 3/4 full and bake 23-25 minutes, until lightly browned on top and a toothpick comes out clean.

Maple Granola (Vegan)
Makes 8 cups. From Cookie and Kate.
  • 4 cups old-fashioned rolled oats (use certified gluten-free oats for gluten-free granola)
  • 1 ½ cup raw nuts and/or seeds (I used 1 cup pecans and ½ cup pepitas)
  • 1 teaspoon fine-grain sea salt (if you’re using standard table salt, scale back to ¾ teaspoon)
  • ½ teaspoon ground cinnamon
  • ½ cup melted coconut oil or olive oil
  • ½ cup maple syrup or honey
  • 1 teaspoon vanilla extract
  • Later:
  • ⅔ cup dried fruit, chopped if large (I used dried cranberries)
  • Totally optional additional mix-ins: ½ cup chocolate chips or coconut flakes

  1. Preheat oven to 350 degrees Fahrenheit and line a large, rimmed baking sheet with parchment paper.
  2. In a large mixing bowl, combine the oats, nuts and/or seeds, salt and cinnamon. Stir to blend.
  3. Pour in the oil, maple syrup and/or honey and vanilla. Mix well, until every oat and nut is lightly coated. Pour the granola onto your prepared pan and use a large spoon to spread it in an even layer.
  4. Bake until lightly golden, about 21 to 24 minutes, stirring halfway (for extra-clumpy granola, press the stirred granola down with your spatula to create a more even layer). The granola will further crisp up as it cools.
  5. Let the granola cool completely, undisturbed (at least 45 minutes). Top with the dried fruit (and optional chocolate chips, if using). Break the granola into pieces with your hands if you want to retain big chunks, or stir it around with a spoon if you don’t want extra-clumpy granola.
  6. Store the granola in an airtight container at room temperature for 1 to 2 weeks, or in a sealed freezer bag in the freezer for up to 3 months. The dried fruit can freeze solid, so let it warm to room temperature for 5 to 10 minutes before serving.

American Girl Brownies (Yes, Vegan!)
Yes, they’re soft in the middle! Makes a 13 x 9 pan. Adapted from American Girl.
 
  • 2 cups flour
  • 1.5 cups sugar (or a mix of granulated sweetener and sugar)
  • 1 cup cocoa powder
  • 2 T baking powder
  • 1/2 tsp salt
  • 1 cup oil
  • 1 cup maple syrup
  • 1/2 cup dairy-free milk (unsweetened)
  • 1 T vanilla
  • 1 cup dark chocolate chips
 
Heat oven to 350. Whisk dry and wet ingredients separately, and then put the dry into the wet. Mix until just combined. Fold in chips. Pour into greased pan. Bake 34-36 minutes, until toothpick comes out clean.
 
Why do I care about vegan baking? The reasons are both for health and the environment.


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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Where Can I Send Cards to Patients? A Card Swap

3/12/2021

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Since July I have been involved with the monthly Chronic Warrior Card Swap, in which people with chronic illnesses send one card to a recipient whose name and address are emailed to them. I enjoy making cards and brightening people's days, so this is a win-win for me. I always include an uplifting handwritten message in my cards. Then again, with these recipients, store-bought or printed-off cards are welcome as well. We have some understanding of the difficulties of daily life with illness. There are backup systems in place if you're not able to send a card in a given month.

​This card swap is an easy way to help and meet other patients. It's not a chain letter system. I recommend joining. Get started by visiting ChronicWarriorCollective.com.
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What’s the Point of Illness Memoirs? A Review

2/19/2021

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I read an article that is part reflection on the cultural or philosophical purpose of illness memoirs and part review of What Doesn’t Kill You: A Life With Chronic Illness by Tessa Millerby. The article, “The Consolation of the Illness Memoir” by Anna Altman at The New Republic, caught my attention as the author of an illness memoir. Some intriguing quotes from the article:
  • “They each have to navigate an extortionate, elaborate, and emotionally draining private health care system. Miller connects her own experience to the American health care industry as a whole, from a several-billion-dollar wellness industry peddling dubious cures and therapies to a medical system in which doctors typically give their patients 11 seconds to explain their symptoms before they interrupt them.”
  • “‘Chronically ill people grieve two versions of ourselves: The people we were before we got sick and the future, healthy versions that don’t exist (or, at least, look much different from what we’d imagined),’ [Miller] writes. She introduces the idea of ‘ambiguous loss’ a type of grief that arises when there is no clear outcome. That ambiguity, Miller acknowledges, can prevent resolution.”
  • “Whether because there are so many different diseases and conditions without a unifying experience, or due to our inability to truly understand another body’s experience of pain, the fact that millions of people in the United States live with chronic illness, many of them invisible, remains opaque in our cultural imagination.”

The article’s author notes that she has chronic migraine. Even if illness memoirs so far have failed to revolutionize American health care and cultural treatment of people with chronic illnesses, I believe the books are well worth writing and reading, for the benefit of patients and those closest enough to them to truly listen. Have you written one? If so, let me know, and I'll read it!

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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Best New Hand Warmers of 2021

2/1/2021

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As a person with Reynaud’s disease, I frequently try new ways of warming my fingers and toes. The two solutions I’ve tried this year are affordable (and available in pink, among other colors). I detest that they’re made in China instead of the USA but like their effectiveness enough to share them with others with cold fingers.

AmazonBasics Desktop Space Heater
This ceramic 6 x 6 x 3 space heater heats fast and well when aimed at my right hand. With only one button, it’s the easiest space heater to operate. It’s just heavy enough not to tip over and just loud enough to prompt me to turn it off during video calls. It cost me $26 on Amazon in January 2021.

Beskar Hand Warmer
I’ve managed to get this hand warmer to work for 7.5 hours (1 hour on medium and the rest on low) before recharge, which is longer than any electric hand warmer I’ve had. It’s easy to operate and a little larger than many other models. It cost me $25 on Amazon in January 2021.

See a previous review of warming products here: https://www.darlanagel.com/blog/winter-warmer-product-reviews-for-feet-and-hands.
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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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    Author:
    ​Darla Nagel

    Darla copyedits biomedical research and writes natural health magazine articles while living with an invisible chronic illness. She has a big appetite for chocolate despite being a health nut.

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