Exciting New ME/CFS and Long-COVID Research

There is SO much new and exciting research happening that will benefit both those of us who've had ME/CFS for years and newer patients just struck down with long-COVID more recently. One source for these new studies is the Open Medicine Foundation (OMF), which has been studying ME/CFS for years.

This fall, OMF hired me to do some freelance writing, reading scientific summaries of five of their new research projects and writing brief, easy-to-understand recaps for patients, their families, and OMF donors. I am happy to now share these summaries with you, each written for laypeople and each presenting some very exciting opportunities for new discoveries about our disease.

Currently, you can access all of these layperson summaries from OMF's News page, but here are some quick links - I promise all scientific terms are explained simply!

Neutrophil Study - this study by Ron Davis and his Stanford colleagues aims to identify neutrophil abnormalities in ME/CFS patients (and yes, don't worry - my summary at the link explains what neutrophils are!). This study could potentially lead to a new biomarker for ME/CFS.

Post-Exertional Malaise (PEM) - conducted by Dr. David Systrom, the top PEM expert, to better understand the causes and effects of PEM (aka exertion intolerance), a feature unique to ME/CFS that is often the most debilitating part of the disease.

Does ME/CFS Have a Biomolecular Signature? - the aim is to identify a unique combination of biochemical characteristics present only in ME/CFS, perhaps leading to diagnostic tests or treatments.

Does ME/CFS Change Molecularly Throughout a Day? - I'm very excited about this study because we patients know that our ME/CFS is constantly changing, day to day and hour to hour, but no one has studied these changes in such detail before!

Raman Spectrometry-Based Biomarker Discovery for ME/CFS  - this study aims to characterize the biochemical signature of ME/CFS, using a specialized kind of testing.

Aren't these exciting studies? I can't wait to hear the results! Scientists are really starting to dig into the nitty-gritty details of our disease.

I also helped OMF find families to interview for this excellent article, The Crisis of Sick Children with ME/CFS and Long-COVID, featuring families from our Parents' group on Facebook.

I think all this new research bodes well for a Happy New Year!

Chronic Illness Vlog 12-27-22: Holiday Preparations!

Somehow, in the midst of a crazy busy week, I managed to record a few short video clips for a weekly vlog! Fortunately, I was feeling relatively good last week, especially compared to the past few months. I did have one mysterious crash mid-week that turned out to be not-so-mysterious!

You can watch this short vlog on YouTube or below:

How are YOU this week?

And how did you manage the holidays this year?

Let me know in the comments below.

Holiday Help for the Chronically Ill

I have been immersed in holiday preparations (I successfully did a little bit each day this year to avoid the last-minute rush!), but I wanted to take a few minutes to wish you all a happy holiday season and to offer some tips, support, and fun to help you through this often-difficult time for those with chronic illness.

First up, the part of the holidays I struggle with the most (and many of you, too, from your posts and comments) is family relationships, which can be challenging when you're chronically ill. Those challenges multiply with the stresses and expectations of the holiday season. That's why I wrote Managing Family Relationships - Holidays and Beyond, which is excerpted from my book. This article/chapter provides practical tips to help you not only manage relationships but even enjoy the holiday season, in your own way.

Last year at this time, also in a time crunch without time to write my own post, I collected Chronic Illness Tips and Support (and Fun!) from other chronic illness bloggers and writers. Check out that round-up of support, practical advice, and some time-out fun, too. There is a lot of collective wisdom in the large chronic illness community!

Finally, when you just need to take a break from all the activity and people and noise, check out Movies and TV for the Holidays (or Not!), my own collection for the season. I included some of my favorite holiday movies, old and new, and some outstanding, uplifting non-holiday movies and TV shows, if you just need to escape for a bit. Re-reading this list reminds me of how great these films and shows were!

OK, that's it for me until after Christmas. I still have a few more decorations to put up, cooking to do tomorrow, and my son and his girlfriend are coming for dinner in a bit. Trying to pace myself!

How are you doing this holiday season?

Do you have any tips or favorite holiday movies and TV shows?

Please share in the comments.

Enjoy the holiday season, in whatever way you can!

TV Tuesday: Kindred

One of my favorite books read this year was Kindred by Octavia Butler (my review at the link), which I read for a book group hosted by my local independent bookstore in February. This historical fiction time travel story blew me away, so when I heard that a TV adaptation was coming, I was thrilled! My husband and I started watching it on its release date last week. We are three episodes in so far and are both loving it.

Dana, played by Mallori Johnson, is a young writer who has just moved cross-country from New York to California. She sold her grandmother's house in Brooklyn and purchased a house on a peaceful tree-lined street in L.A. She meets Kevin, played by Micah Stock, a waiter in the restaurant where she's just gotten into an argument with her aunt and uncle, her only family in town, who don't seem pleased about her recent move. Dana and Kevin get to know each other over the next two days, as he helps Dana buy some essentials for her empty house. He spends the night but wakes to Dana screaming on the floor. She's just been transported to a Maryland plantation in 1815, where she saw a white boy named Rufus drowning in the river and saved him. While she was leaning over the boy, after reviving him with CPR, his mother arrives and begins beating her, and his father points a gun at her. Then, Dana is back in her home, with Kevin asking what happened. This continues, as she and Kevin try to figure out what is happening and why she keeps getting pulled back. Meanwhile, in the present day, Dana has some new nosy neighbors who keep coming to the house to investigate the screams and clearly suspect Kevin is abusive to Dana. Then things really get interesting.

If you've read my reviews before, you know I hate spoilers, so that is just the barest outline of the first episode or two, as much as is shown in the trailer. SO much happens in this story. I read the book and loved it, and my husband has not read the book, but we are both enjoying the TV show, so I recommend it whether you know and love this story or are unfamiliar with it. There are a few changes and additions to the TV show, but so far, they all add to the story rather than detract.  The main actors, playing Dana and Kevin, as well as the people back in the 1800's, are all excellent in their roles. Dana's fear and Kevin's confusion are palpable, as this unbelievable thing continues to happen. It's all the more interesting because Kevin and Dana barely know each other but are suddenly flung into life-or-death situations (this is one of the changes; in the book, they are married). The settings, both modern and historic, are rendered in great detail, making both times feel real. The suspense and tension are keeping us riveted to the screen.The premise is so compelling, with so many layers to it, that it's hard not to just binge the whole thing all at once, but I want to make the 8 episodes last. Seeing a modern Black woman suddenly stuck on a plantation during slavery times is disturbing but also powerful and gripping. This is one of the best shows on TV right now! I can't wait to see the rest of the season.

Kindred is streaming exclusively on Hulu.

Chronic Illness Vlog 12-12-22: Up and Down and a Dose of Nature

While I was able to finally recover from my three-month-long relapse, thanks to starting some treatments and stopping others (more on that in a future post), I'm still not quite back to what I consider my "normal" baseline.

So, this vlog from last week provides a pretty typical view of how I'm doing right now, with some good and active days, some run-down days, a COVID scare, and a nice dose of much-needed nature to share with you.

I had a very busy day yesterday (too busy, clearly) and am feeling pretty crummy today, so the ups and downs continue. This time of year is always tough for me, with too much to do. As a book blogging friend said to me earlier this week, "I can barely keep up with everything normally, and then to add holiday preparations--impossible!" 

Right now, I am trying to decide if I can manage my neighborhood book group tonight. I haven't been able to go since May, and I did have a good, long nap this afternoon ... but I'm still not sure I have the energy. After that long relapse, though, I have been reminded of how much I need some social interactions and to see friends once in a while. I still have two hours left to rest and decide!

Tell me how YOU are doing this holiday season?

How's your health been?

Is this time of year hard for you?

Let me know in the comments below.

Movie Monday: Licorice Pizza

Last weekend, with many of the shows we watch on cable on hiatus until the new year, we decided to watch a movie. We chose Licorice Pizza, a 2021 movie that was nominated for three Oscars, including Best Picture. It got a 91% on Rotten Tomatoes, and it was on my (very long!) list of movies I've been wanting to watch. We enjoyed this coming-of-age film set in the 1970's.

Gary, played by Cooper Hoffman (son of the late, great Phillip Seymour Hoffman), is a precocious fifteen-year-old in L.A. who's been working as an actor since he was a young child. One day at school, he spots a young woman he's never seen before. Alana, played by Alana Haim, is twenty-five and working for the photographer at school that day, but bold Gary asks her out. She eventually agrees to meet him for dinner (he's very persuasive) but emphasizes that it's just as friends. Despite their age differences, Gary is the one who is confident and knows exactly what he wants from life (plus he makes a lot more money than she does), which is appealing to Alana since she isn't sure what she wants to do, except that she does not want to work for a school photographer. Gary brings Alana into his world. It's clear he's in love with her, but they are just friends, though there is definitely some tension. They have many adventures together and apart, they talk and have fun and sometimes argue, and the two of them spend a lot of time together, often with Gary's friends, and get into all kinds of trouble. Gary starts a couple of businesses and helps Alana see the potential in her own life, though she eventually finds her own passion.

All of these exploits are set against the backdrop of 1973 L.A. And it's a whole lot of fun to accompany Gary and Alana on their explorations! The fashions, the colors, the cars, the current events, and the settings are all vibrant and entertaining. Accompanying all of that is a great 70's soundtrack. Though Gary and Alana are definitely the center of attention here (and both are excellent in their roles), the movie is filled with big-name cameos, including Sean Penn, Tom Waits, and Bradley Cooper. And did I mention it's funny? This movie has a great sense of humor. My husband described this movie as quirky (which is not always a compliment from him), and it is definitely a little weird. But I thoroughly enjoyed this nostalgic, enjoyable trip back in time that often left a smile on my face. It's not deep, but it's a whole lot of fun!

Licorice Pizza is currently available free on Amazon Prime and Paramount+, plus available for a fee on many other services.

Gifts Created by and for Spoonies (Newly Updated!)

(Note: spoonie refers to anyone living with chronic illness and disability.) 

This holiday season, why not help to support your fellow chronic illness peeps by purchasing cool, unique gifts created by those with chronic illness and disabilities? Or maybe you deserve the gift of self-care for the new year!

When I put out a call for gifts created and sold by those with chronic illness, I was inundated with all sorts of wonderfully creative items! Some are made specifically with spoonies in mind and others would make great gifts for anyone on your list. And you'll be helping to support fellow spoonies! Check out these awesome items:

Books

Suzan L. Jackson (I had to include my own book, too!)

Finding a New Normal: Living Your Best Life with Chronic Illness – guidance on emotional coping, daily living, relationships, and more.

Available anywhere books are sold, in paperback and all e-book formats.

Available here. 

Melissa Gijsbers

Melissa's son has ME/CFS, and she wrote a children's book about his experience, 3, 2, 1 ... Done, plus lots of other children's books and books for writers.

Kristin Houlihan

Kristin has written Lift the Mask: a short collection of poetry and lyrical prose which is very brain fog friendly! "Poetic and heartfelt musings on life, parenting, and faith, told through the lens of a chronically ill and disabled mom."

 

Lene Anderson

Lene is an award-winning writer with rheumatoid arthritis (RA), She has several books, including Your Life with Rheumatoid Arthritis: Tips for Managing Treatment, Side Effects, and Pain and Chronic Christmas: Surviving the Holidays with Chronic Illness, which sounds very helpful right about now!

Amy Arthur

Amy has a brand-new book coming out December 28 (available for pre-order now), Pace Yourself: How to have energy in an exhausting world. The link goes to the UK Amazon website, but they do also deliver to the U.S. (and probably other countries as well).

 

K.T. King

Fiction (including Little Eden series) and nonfiction (including 21^st Century Prayers series), available in paperback and e-book. Author has ME/CFS.

Available here.

JK Morgan

This chronically ill writer has published novels, short stories, poetry, and more. You can read all about her and her work on her website. Many of her varied books are available on Amazon.

 

Kathleen O’Shea

So Much More Than a Headache: Understanding Migraine Through Literature

Available in paperback and e-book.

Victoria Mack

5-Minute Gratitude Journal for People with Chronic Illness - A beautiful journal, with inspiring and supportive prompts to help with mindfulness, gratitude, and self-care.

Available here.

 

Infinitely Chelle – Chelle del Rosario

Beautiful notebooks and reading journals (wide variety with fun prompts).

Available here.

Jen Hardy’s Planners

3 planners: Path to Happiness 5-year Journal, Chronic Illness Journal for Moms, and a Business Planner.

Available here.

 

Jewelry

Words as Medicine Shop – Etsy – Christina B.

Wide variety of earrings – all different kinds of themes, shapes, colors, including holiday themes. I love earrings and want all of these! I ordered the gingerbread men/peppermints last year.

Available here. 

(Also see under Other Gifts - several sellers with multiple items include jewelry)

Other Gifts

Crafty Miss B – Etsy - Beth

Wide variety of hand-crafted items, made with embroidery, wood, metal, and fabric. Gifts include bookmarks, jewelry, decorations and ornaments. Creator has ME/CFS. She is on a break but will return in the new year.

Only ships in UK.

Available here.

FUMS – Kathy Reagan Young (has MS)

Wide variety of gifts with the FUMS logo, including hats, tote bags & fanny packs, clothing, masks, and more.

Available here. 

SunnyAuntCreations- 

Her RedBubble shop features beautiful watercolors on clothing, cards, stickers, and other products, and her Etsy shop includes watercolor prints and cards. Her work is beautiful!

BibiPins - 

Black, queer, disabled creator offers a wide range of gift items, including stickers, pins, stationery, compression garments, and much more! Full shop here.

 

InPhusions - 

Botanical body butters aimed at others with skin conditions and pain, from a Black, queer, trans, disabled creator. See and order products here.

Grace and Magic – Etsy – Katherine Grace

Beautifully designed planners, journals, notebooks, and trackers, available in print, digital, and printable pages to help with all kinds of planning, organizing, tracking, and self-care.

Available here.

Siren Blossoms – Heather Wright

A wide variety of printables, jewelry, and books, available through Etsy, Amazon, and other platforms. All links here:

Available here. 

Achy Smile Shop – Erica Nicole Carrasco (chronic migraine)

Beautifully-designed migraine-themed shirts, stickers, hats, bracelets, and phone cases.

Available here.

 

RatnaRaniBracelets

The creator has ME/CFS and offers a wide variety of artwork, jewelry, clothing, skin serums, and more. Visit her Etsy shop.

 

Chronic Illness Shop Directory:

 

Ability Shop: Chronic Illness and Disability-Owned Small Business Directory

A directory of businesses of gifts, businesses, books, art, and services from those with chronic illness and disabilities.

Available here.

WOW! So many unique gifts from so many creative folks with chronic illness and disabilities! I love the idea of getting cool gifts (for others and for myself) while also helping to support fellow spoonies. 

Happy Shopping!

And if YOU create gifts or other items that are available for sale and not on this list, please include your link in the comments below (if you have trouble leaving a comment on a mobile device, try using a computer).