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).

Giving Tuesday 2022 - Help ME/CFS and long-COVID Patients

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30! Any donations to groups that do ME/CFS research and/or support ME/CFS patients will also help those with long-COVID.

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingTuesdayOMF - today is the final day of this generous gift by multiple donors, and every donation is TRIPLED, up to $500,000! It's a great opportunity to make your money go farther! This organization does some outstanding scientific research into causes, treatments, and cures for ME/CFS and long-COVID. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - An anonymous donor for Solve ME has pledged to match up to $25,000 in donations made TODAY.  This organization does a lot of work in both ME/CFS and long-COVID research and advocacy! You can read their newsletters here, including research updates and read more about their Long-COVID Initiative here.
  
• Simmaron Research - donate through their website and you can read all about their research projects here.
• #MEAction - this organization is focused on advocacy and outreach rather than on research, but they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, their home page includes ways that anyone can help and take action, and you can donate to the organization here.
  
• ME Association - This UK organization supports patients and research in both ME/CFS and long-COVID. Here's more about the organization and what they do, plus their current research projects.
• Emerge - the primary ME/CFS association in Australia that provides research and patient support and advocacy. They are now also helping to support the brand-new branch of Open Medicine Foundation - Australia. You can donate on their website at the link.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. For Giving Tuesday, Facebook has pledged to match up to $7 million dollars in donations! I have hosted fundraisers on Facebook for my birthday, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, share your fundraiser with Facebook friends, and then Facebook will double whatever donations you bring in! More info on how it works and the matching gift today here.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. You can also earn by using the site to search. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $296.31 to them, and that they have earned a total of $6583.88 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online.

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options). My quarterly report from AmazonSmile from September 2021 says they sent a payment of $1338 to Solve ME/CFS for the quarter and that to date, the organization has received $22,792 from AmazonSmile! I added more to that yesterday. These shopping links really pay off, with almost no effort and no cost to you.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

Chronic Illness Vlog 11/21/22 - Trying Treatment Changes

Not much time this week. We're rushing to get ready for a trip to my hometown (Rochester, NY) for Thanksgiving. I'm not in great shape, but I'm not in awful shape, either. I made a change today that I hope will help me get through the long holiday weekend!

And that's a lot of what last week's Chronic Illness Vlog is about - making changes in my treatments. Happily, the result, as you'll see here, is that I am finally feeling better and able to do more. You can watch the latest vlog on Youtube or below:

I'm a bit anxious about the trip and how I've been feeling, but I'll feel better once we are out the door and on the road tomorrow (about a 7-hour drive). I'm already very happy to have our older son home with us and looking forward to spending several days with all of us together. I'm also looking forward to seeing some extended family, though I'm nervous about COVID, and social gatherings exhaust me.

Hope that all my U.S. readers enjoy a wonderful Thanksgiving!

And please tell me about YOUR week in the comments!

New Diagnostic Codes for ME/CFS and Long-COVID Now Active!

I thought I already wrote about this exciting advance for patients of ME/CFS and long-COVID, but I can't find it among my blog posts. Well, it's been a rough few months--it's entirely possible I never got to it! So, here's the big news:

Effective October 1, updates to the ICD-10-CM, the U.S. version of the International Classification of Diseases, will include ME/CFS--using both terms, myalgic encephalomyelitis and chronic fatigue syndrome--and also long-COVID.

ICD codes are the diagnostic codes that doctors must use each time they consult with a patient--insurance companies require them. In the past, doctors had to fit us ME/CFS patients in wherever they could. Often that meant using "chronic fatigue--unspecified," which of course was not accurate. Old ICD codes also referred to myalgic encephalomyelitis as "benign'!

These diagnostic codes that doctors assign are recorded and tabulated, and knowing how many patients suffer from a particular disease can affect funding, allocation of resources, and attention from the NIH and other bodies. No wonder ME/CFS has never gotten any significant government funding.

You can read a summary of the new codes and the changes made here (put together by #MEAction).

I printed a copy of that summary and gave it to each of my doctors, asking them to share with all their staff and to use the new code (G93.32) for my son and I and any other ME/CFS patients and pointing out the new long-COVID codes (either G93.3 or U09.9).

This is an important and exciting step forward for all ME/CFS and long-COVID patients. Many of us have waited decades for this!

So help to spread the word!

TV Tuesday: So Help Me Todd

I included trailers for several new TV shows we wanted to try in my Fall 2022 TV Preview post, and one of our favorites from that group is So Help Me Todd. We are really enjoying this crime drama that mixes in family and a great sense of humor.

Marcia Gay Harden plays Margaret, a successful lawyer at a top law firm in Portland, OR. She is always dressed beautifully and perfectly poised. Her son, Todd (played by Skylar Astin), is her opposite, living life from the seat of his pants and the black sheep of their very accomplished family. Todd lost his private investigator license for some illegal activities and has been a bit lost in the two years since. His mother is constantly harping on him to grow up and live more like an adult, but this time, she might actually have a good idea. After Todd helps her, both with a legal case she's representing and a personal matter, she hires him as an investigator for her firm, though the firm's existing investigator, Lyle (played by Tristan J. Winger), never lets Todd forget he's the top dog. In between solving cases for his mother--and gradually earning her respect--Todd is also spending more time with his family, including his sister, Allison (played by Madeline Wise), her husband, his brother-in-law, Chet (played by Thomas Cadrot), and his niece, Clem. As Todd becomes closer to his family, he solves case after case and becomes an asset to Margaret and her firm. And maybe Margaret even learns to loosen up a bit (maybe).

This show has all the ingredients we love in a TV series: mystery, suspense, family drama, and a wonderful sense of humor. The two lead actors--Harden and Astin--are outstanding in their roles, and the supporting actors are all excellent as well. Each episode deals with a different legal case that Todd helps to investigate, usually with a twisty plot and plenty of surprises. The relationship--and the banter--between Todd and Margaret is fun and amusing, but there is also a sense of warmth as the two of them and the rest of the family grow closer to each other. We've watched seven episodes so far (#8 comes back in December), and we look forward to it every week. No word yet on whether this wonderful show will come back for a second season, so be sure to check it out soon so the decision-makers know that people are enjoying it!

So Help Me Todd airs on CBS Thursday nights. We watch it On Demand, and it is also available through Paramount+, Hulu, CBS TVE, Pluto TV, and other popular streaming outlets.

Outdoor Nature Vlog & Good News!

The good news is that I finally seem to have come out of this months-long relapse that has trapped me on the couch since August! I made one medication change three weeks ago and two more last week, and I felt really good most of this week. I am pretty much back to my normal baseline, though my stamina is low after not doing anything for months. But I took my first walk in over 3 months this week, with no crash afterward! It's been a complicated situation, so I will write a longer blog post next week, explaining what helped me.

Best of all, we finally got our camper back from the repair shop (it had been hit in a traffic accident), just in time to take advantage of the last warm weather of the year. We went camping for two days to Trap Pond State Park in southern Delaware, and I was even able to manage kayaking. Trap Pond is the site of the northernmost-occurring natural grove of cypress trees, which are beautiful. The weather was great, and the natural beauty was stunning. We could see the lake/pond right from our camper.

So, this week, my usual vlog was a whole lot more fun! It's mostly video clips and photos of our camping trip and the gorgeous natural world around us. There's a little bit at the end about the books I'm reading, too. Studies show that just looking at pictures of nature improves both physical and mental health, so I hope you enjoy coming along on our trip! You can watch the video on YouTube or here below:

Chronic Illness Vlog 10-31-22 & Happy Halloween!

Last week's vlog shows an honest view of my life with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), Lyme disease, and Orthostatic Intolerance (OI).

I am still--slowly--working my way back from this months-long relapse, but I am definitely seeing improvements. I actually went OUT last week--three times!--and enjoyed a fun weekend. That's a big step forward.

I'm still on the couch today and still achy, but I'm much more functional than I was a few weeks ago, when I was unable to even sit up briefly.

As always, you can watch the video on YouTube or I'll imbed it below.

However you watch, please take a moment to leave a comment and let me know: 

How was YOUR week?

ME/CFS and Long-COVID New Research Summary

It's been a long time since I wrote one of these research updates, but I've got about 20 open tabs in my browser with exciting studies on ME/CFS and long-COVID that I want to share with you! 

The research into myalgic encephalomyelitis and chronic fatigue syndrome has been encouraging for many years, as scientists figure out more and more pieces of the puzzle. However, the high incidence of long-COVID and its connection to ME/CFS has resulted in an enormous increase in both research interest and funding. Expect to see a whole lot more coming soon!

In the meantime, here are some quick overviews (with links to more details) of research into ME/CFS and long-COVID that I found interesting and encouraging:

 

Orthostatic Intolerance:

This article, Why the 10-Minute NASA Lean Test?, by Dr. Lucinda Bateman, one of the top ME/CFS clinicians in the world, describes a series of studies her clinic has done in the past few years on Orthostatic Intolerance (OI) in ME/CFS patients. Her summary (at the link) is easy to understand and fascinating. As previous studies had indicated, ME/CFS and long-COVID patients who definitely had OI did not always meet the official criteria during the standing/lean test. Her team pointed out, though, that even ignoring the numbers, it was clear these patients did have OI from their symptoms and reactions during the test. They also discovered a new measure (the ratio of pulse pressure to systolic blood pressure) that was more accurate in identifying OI in the ME/CFS and long-COVID patients.The differences between newer patients and those of us who've had it longer are interesting, too.

When I researched OI for the two articles I wrote for the ProHealth website on the topic, I came across a study showing that the standing test is still more accurate than a tilt table test (and far less expensive and easier to get done), but as I explain in the article, you may need do the standing test multiple times to get accurate results and your doctor should always take into account your symptoms while standing and not just the numbers. The original articles have been taken down (along with all articles on specific diseases), but you can read copies I made here: Part 1 - Diagnosing Orthostatic Intolerance in ME/CFS, and Part 2 - Treating Orthostatic Intolerance in ME/CFS. I know the links don't work in these articles, but they both still contain scientific references at the bottom that your doctor can look up for more information, so they're ideal to print and share with your medical team.

 

Identifying Genes in ME/CFS:

1. It has long been known that ME/CFS has both infectious and genetic roots, proven through several studies of families. More than a decade ago, I participated in a study to identify the exact genes involved in ME/CFS, but that study ended when it lost funding. Finally now, many different research organizations are digging back into that problem--with newer technology--and trying to identify the genes that make someone more susceptible to ME/CFS.

In his blog/newsletter, ME/CFS Research Review, Simon McGrath reports, New Study Links 14 Genes to ME/CFS. This study has not yet been published but has been submitted to a scientific journal and is being considered for publication. It used existing genetic data from the UK BioBank and analyzed it in a new way to identify 14 genes that seem to be linked to ME/CFS, paving the way for a possible way to identify patient sub-groups. 

Much of the article at that link is quite technical (far too much in the weeds for me!), but if you scroll down to the bottom, the heading What Do the 14 Genes Do and Can They Explain ME?, it's pretty interesting and easy to understand, highlighting areas of autoimmunity, energy metabolism, sleep, and infection. You might also be interested in the two sub-headings before that: Success with Other Illnesses and Issues with the UK Bio Bank Sample.

 2. Another genetic study of ME/CFS and long-COVID was just published. It is a systemic review of ALL genetic studies published to date on ME/CFS and long-COVID (that includes 23 ME/CFS studies and 71 long-COVID studies, which shows you how long-COVID is affecting the state of research!). You can read a summary (and further down the page, an abstract) of this study in the ME Association's weekly Research Round-Up, October 4-10 (there's also an audio option at the link if you prefer to listen). 

These kinds of review studies can be very helpful in pulling data together. This review found a range of common genes affecting both ME/CFS and long-COVID, including one involved in controlling blood pressure and two involved with immune function. The Research Round-up at that link also includes brief summaries of studies of long-COVID dealing with immune function, potential causes, MCAS, and a potential biomarker.

That's all I have the energy for writing about today--and probably all you have the energy to read, as well! I will try to get back to more frequent updates, both to stay up-to-date and to keep my browser from getting so cluttered!

If you are interested in current research of ME/CFS and long-COVID, I highly recommend checking out the ME Association's weekly Research Round-Up. I linked to the Oct. 4-10 summary up above, and you can see their October 11-17 summary, which includes 7 new studies on ME/CFS and 15 new studies on long-COVID.

I've also been doing some freelance writing, helping Open Medicine Foundation to write patient/layperson summaries of some of their new research projects. Wow, there is some really exciting research coming up! They'll be sharing those in November, and as soon as they're published, I'll share them here with you, too.

Interview on Chronic Illness and ME/CFS

Last week, I was interviewed by my local independent bookstore! They were very understanding about my limitations and the potential issues with me doing an in-person event in a crowded store, so they used me as a test case for a new process: prerecording an interview on a videoconferencing app and then sharing it on their Facebook page. It worked out very well! Though I am still very slowly working my way out of this months-long relapse, I was able to sit up long enough for a half-hour interview in my own dining room!

The interview covers living with chronic illness in general and my book, Finding a New Normal, but she also asked me quite a lot of questions about ME/CFS specifically. She had just recently interviewed Meghan O'Rourke, author of The Invisible Kingdom, who also has ME/CFS, so she knew a bit and was interested to learn more. I mentioned the connection with long-COVID as well. That provided a great opportunity to build awareness of our oft-misunderstood illness! We also chatted about the writing process and about books and reading.

You can watch the short interview on the bookstore's Facebook page (sorry, this isn't one I can imbed here).

Hope you enjoy the interview!

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Weekly Inspiration: Living in the Moment

Chronic illness is filled with challenges, and it can be difficult--or even feel impossible--to be happy in the midst of a life ruled by limits and restrictions. But it is possible, and I wrote a whole book with ideas on how to improve your life with chronic illness, embrace small moments of joy, and find happiness within your limitations. I'm always interested in learning more, though!

I came across this TED talk called Want to Be Happier? Stay in the Moment by researcher Matt Killingsworth who studies happiness. It's a short 10-minute talk, but I found it very interesting and thought-provoking. Matt studied data from an app where people rate their happiness at different times of day and say what kind of activity they are doing and whether their mind is wandering. The results are fascinating. You can watch the talk below (or watch at the link):

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He talks a lot here about staying in the moment and the impacts when your mind wanders. This is something I definitely struggle with. In fact, while watching this video and trying to listen and enjoy it, I realized my mind kept wandering! I was thinking about what I'd write in this post, what I wanted to get done today, how bad my aches are today, and how to rearrange the shelf of cookbooks in my kitchen. And that was all in just 10 minutes!

On the other hand, as I was getting ready for bed last night, I realized I was feeling very happy, maybe even euphoric! I thought about our evening. Because of my months-long relapse, I haven't been able to go out much or see friends very often. Good friends invited us over for dinner last night a few days ago, but I didn't want to schedule something, have them plan, shop, and cook, and then have to cancel. So, I texted them yesterday morning and said, "Hey, I'm feeling OK today. Do you guys want to come over for takeout and a campfire?" They did, and we had a wonderful evening catching up with them, eating delicious Thai food, and enjoying a roaring fire on a beautiful fall evening. Several things made me happy last night: seeing friends and enjoying good conversation, good food from one of our favorite restaurants, and spending time outdoors, which always lifts my spirits. And all while I was reclined in my lounge chair at home! But now, after listening to this talk, I am realizing that I was also fully engaged in the moment last night, with little mind wandering. 

I think I need to focus more on this concept of mind wandering because even when my body is incapacitated and lying on the couch, my mind is constantly thinking about other things. Even when I'm watching TV, I'm usually checking e-mail or scrolling Twitter (a new bad habit, thanks to finally having a smart phone!), or glancing at the newspaper. (One thing I love about reading a book is that you can't do other stuff; you have to focus, which allows you to lose yourself in the story.) With chronic illness, we have the added challenges of constantly assessing our current condition: Do I need to eat? Is it time for meds? What caused this crash? Did I do too much yesterday? What will I be able to do tomorrow? Some of that is necessary, but I'd like to reduce all this mind wandering, especially when I'm doing something that should be enjoyable!

I want to try to focus more on not just living in the moment but recognizing and enjoying the moment, even if my happiness is from simple joys, like lying in the sunshine on our deck, looking at fall foliage, or reading a good book.

How about you?

Do you struggle with an overactive mind?

How do you help yourself to live in the moment?

Let me know in the comments below.