Research Update - February 2020

My browser has about twelve open tabs currently, and eight of them are "new" research studies on ME/CFS. They have been sitting open and cluttering up my laptop's browser for a long time (some a very long time!) because I wanted to be sure to both read (or at least scan) them myself and share them here with other patients.

The good news is that there is a lot of medical and scientific research happening in the ME/CFS world, and it is in a wide variety of different aspects of the disease: exercise intolerance, immune dysfunction, and more. Such a wealth of growing knowledge means that experts are slowly but surely learning more about what is behind our very complex disease ... which means that advances in diagnosis and treatment will be following.

There is a lot here, so I will stick to some brief summaries and links to more information:

Immune System Dysfunction

Mast Cell Neural Interactions in Health and Disease
This paper from last year provides a summary of mast cell interaction with the nervous system through various means. It is a review article, which means that its authors didn't do any new research themselves but instead wrote this paper to pull together the findings of many different studies. This type of review article is very helpful, as it takes lots of different studies and summarizes all their findings together, providing an overall picture of one aspect of a disease process. If you are not familiar with Mast Cell Activation Syndrome (MCAS), take a look at this earlier blog post where I explain what it is and provide treatment tips (often inexpensive, over-the-counter meds) and links to more information. MCAS is a part of the immune dysfunction in many patients with ME/CFS, and treating it can sometimes bring dramatic improvements.

ME/CFS as a Hyper-Regulated Immune System Driven by an Interplay Between Regulatory T Cells and Chronic Human Herpesvirus Infections
This study from the UK, published at the end of 2019, builds on the well-known theory that ME/CFS occurs when a triggering infection (often a very common virus) causes immune system dysfunction in those who are prone to it (other studies show this is probably a genetic predisposition). This team focused in on just a few of the common herpesviruses (HHV-6, HV-1, EBV) and on the response of the body's CD4+ T cells, a component of the immune system. They developed a mathematical model that could potentially mirror what is happening in the immune system of someone with ME/CFS. While this study is somewhat limited--we already know that a wide variety of infectious agents in addition to those three can trigger ME/CFS to start--it provides a start for scientists to better understand what is happening in the dysfunctional immune systems of ME/CFS patients. And the better they understand our disease, the closer we will get to treatments or even a cure.

ME/CFS Patients Exhibit Altered T Cell Metabolism and Cytokine Associations
Like the last paper mentioned just above, this one focuses in on the details of the immune system dysfunction, which is central to ME/CFS. This was a single study, measuring different types of cells that are a part of the immune system and their responses in ME/CFS patients, including CD4+ (also examined in the previous study) and CD8+ cells. The details are a bit complicated, but again, this study is another step in the direction of better understanding the immune dysfunction that is at the heart of our disease. This blog post provides a simplified explanation of immune system dysfunction in ME/CFS - it is important to understand just the basics so that you can treat immune dysfunction and help to normalize your immune system, which will help all symptoms.


Exercise Intolerance and Orthostatic Intolerance

Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in ME/CFS
This paper from the University of the Pacific, which has done outstanding work on exercise intolerance in ME/CFS for decades, is another review article, where the authors examine and summarize the findings of many different studies of exercise intolerance in ME/CFS. Through this process, they identified a new factor to our Post-Exertional Malaise (PEM aka exercise intolerance): chronotropic intolerance, "an inability to appropriately increase cardiac output because of smaller than expected increases in heart rate" during exercise. They came to this conclusion by noting differences between ME/CFS patients during standard 2-day exercise testing (CPET) compared to normal controls and even to cardiac patients. They also concluded that because of this, exercise tests that are supposed to be "sub-maximal" (i.e. not up to maximum effort) are probably well over maximal for those with ME/CFS. If you do not yet know about orthostatic intolerance (OI) and how it affects ME/CFS and exercise intolerance (and how to treat it!), check out this blog post on OI. Treating OI often helps to improve all ME/CFS symptoms, sometimes dramatically, and can allow you to be active again without crashing afterward. This post provides more information on how to use a heart rate monitor to help prevent crashes (which will be easier to do after treating OI). The findings of this study fit with what I wrote in those two blogs posts - people with ME/CFS have a lower-than-normal anaerobic threshold (AT), and standard formulas for calculating AT are likely to be inaccurate for us (adjustments are included in the post).

Norwegian 2-Day ME/CFS Exercise Study Adds Crucial Factor to Exercise Intolerance Findings
Unlike the other research links shared here, this one is not to an original research paper (which are written for scientists) but to an excellent summary, written by Cort Johnson, ME/CFS patient, advocate, and writer. Cort has a real talent for taking complex subjects and explaining them clearly for us laypeople. Here, a recent 2-day exercise test (the gold standard for showing PEM) had a new finding add to the growing body of information on exercise intolerance: in ME/CFS patients, our levels of lactate production immediately increase as soon as we start to exercise. This is yet another piece of evidence that people with ME/CFS switch from aerobic (with oxygen) to anaerobic energy production very quickly. This is not a new conclusion but adding yet another measurable data point can help future studies to learn even more about why even mild exertion makes us "crash."

Energy Production

The Role of Mitochondria in ME/CFS
This is a clear explanation, thanks to the ME Association in the UK, of what the mitochondria do in the body (create energy) and how they are dysfunctional in ME/CFS. It is meant for patients and others to better understand what is happening in our bodies and what research has told us so far about the nature of ME/CFS. There is nothing really new here, but it provides a nice summary, all in one place, of a lot of interesting research results and how energy production works.


Whew, that cleans up my browser quite a bit! But more importantly, all this new research is growing proof that scientists and doctors are learning more about our disease every day. I find the number of research studies in the past few years truly encouraging; it gives me hope for a better future for all of us.

Celebrate Mardi Gras - From Your Couch!

Float in a parade on Canal Street - Mardi Gras, New Orleans, 1988

Today is Mardi Gras day - we used to live in New Orleans, so this is a major holiday at out house! We had our annual party with a few friends (many of whom also lived in New Orleans when we did) on Saturday, and today, we will finish off the season with our annual tradition of Popeye's at a friend's house (yes, Popeye's is authentic Louisiana food!).

 

Want to join the fun today? Here is a collection of ways to celebrate Mardi Gras, New Orleans, and Louisiana today...including food, recipes, travel tips, movies & TV shows, and, of course, some great books! You can also check out my column in Shelf Awareness from last year that features books about and set in New Orleans, Armchair Travel: Destination New Orleans.

 

Great Adult Books Set In/About Louisiana (additional titles in my article linked above):

• The Crowning Glory of Calla Lily Ponder by Rebecca Wells, author of Divine Secrets of the Ya-Ya Sisterhood - I listened to Calla Lily's story on audio and laughed out loud & bawled my eyes out! It takes place in southern Louisiana, with plenty of local color.
• Gumbo Tales: Finding My Place at the New Orleans Table by Sara Roahen - I loved this memoir about the food, history, people, and unique culture of New Orleans.
• Trail of Crumbs: Food, Love, and the Search for Home by Kim Sunée - although this food-focused memoir covers everyplace from Sweden to France to Korea, the author grew up in New Orleans, where the food culture impacted the rest of her life.
  

Middle-Grade and Teen/YA Books Set In/About Louisiana:

• Ruined by Paula Morris - a teen/YA mystery/ghost story set in New Orleans (the perfect setting for a ghost story!)
• The Freedom Maze by Delia Sherman - a compelling middle-grade historical fiction adventure (with a touch of time travel), where a girl from 1960 travels back to 1860 Louisiana
• Zane and the Hurricane by Rodman Philbrick - a middle-grade novel about Hurricane Katrina - powerful and gripping
• Out of the Easy by Ruta Sepetys - most people are familiar with her two YA novels set during WWII (Between Shades of Gray and Salt to the Sea), but this historical novel is set in New Orleans in 1950

Movies & TV Shows

• Chef  - a wonderful, uplifting movie about a family food truck that travels from Miami to LA, with a stop in New Orleans, of course! My favorite movie of the year in 2015.
• NCIS: New Orleans - though it's a crime show, it includes many scenes of New Orleans, mention of local restaurants and landmarks, and other local tidbits. They usually do a Mardi Gras episode around this time of year, so check your cable On Demand.
• You can also check out some classic movies and modern classics with New Orleans settings, like A Streetcar Named Desire and The Big Easy.
• Or tune in to watch parades and other scenes in New Orleans streaming live (or if you missed the parades, some great video clips) at www.mardigras.com.

One of the locals in Louisiana

Travel
All this talk of Louisiana making you want to visit? I have written articles about visiting New Orleans  and Exploring Cajun Country - check them out and start planning your trip (plenty of food recommendations in both!). I'm certainly ready to go back!

Crawfish!

Eat, Drink, and Be Merry!
Notice that many of the books and movies about Louisiana are focused on FOOD? Yes, Louisiana - and especially New Orleans - is known for its amazing, unique food. This blog post on how to celebrate Mardi Gras includes my own recipes for some classic Louisiana dishes, plus food you can grab locally today and webcams where you can vicariously experience Mardi Gras - there are plenty of suggestions in this post that you can still manage to do TODAY! Or save it for tomorrow if you like - we eat this food all year round. 

NOTE that Zapp's potato chips - which you absolutely MUST try) have been bought out by PA-chip maker Utz, so you don't have to get them by mail-order anymore. We can now find them in local stores like Wawa here in Delaware....though we still ordered a carton of assorted flavors for Mardi Gras! (Cajun Crawtator and Cajun Dill are the best.)

Me & my sons, about 10 years ago

NEWLY UPDATED: Facebook Groups for ME/CFS

Connect with others from your couch, recliner, or bed!

Ah, I have been neglecting this blog lately (and my book blog, too!). I have been working hard to finish formatting my book for print, so that I can upload it and make it available in paperback. I had hired a formatter earlier this year, but she spent three weeks on it and then quit abruptly, leaving me with a half-finished print book. Though I have used Word for over 35+ years as a basic word processor, I knew absolutely nothing about how to use its more complicated formatting functions ... nor what to do when it seemed to have a mind of its own! Thanks in great part to Google and the global online community, I think I have finally solved my unsolvable formatting problems. I just have to do one more thorough proofing, save it as a pdf file and hope that doesn't mess everything up, and then I can finally upload it to Amazon and other vendors. It should be available in another week or so, and the e-book is available NOW on multiple platforms.

In the meantime, a friend let me know today that an older post of mine from 2011, New Online Groups for Teens and Parents, had links in it that weren't working right anymore, so I updated it today. In addition to fixing the existing links and deleting ones that no longer worked, I also added some new groups to the post. So, it is now an up-to-date list of many of the best groups for ME/CFS patients on Facebook, with a special focus on groups for young people (though there are groups included there for everyone).

If you are not on Facebook and have no desire to be, some people set up an account with a pseudonym (some use their first and middle names or just make something up) and a fake birthdate and only use their account for interacting with other patients in the many groups available. I explain in that post how life-changing it was for me and for my son to connect with other people like this, so I highly recommend you give it a try!

And, I only included a small list of the groups I know best, but if you know of other online groups (on Facebook or elsewhere) that you'd recommend for ME/CFS patients, please leave them in the comments below.

Now Available! Finding a New Normal: Living Your Best Life with Chronic Illness.

It's finally here! My new book: Finding a New Normal: Living Your Best Life with Chronic Illness.

From Sue Jackson, the author of the popular and award-winning blog Live with ME/CFS, comes a book to help you live your best life with chronic illness. Based on Sue’s almost 20 years living with chronic illnesses in her own family, writing her blog, writing articles on chronic illness, and leading multiple support groups, she provides support and practical advice you can use.

Whether you are in the early days of living with chronic illness or have been at it for years (or decades), there are always challenges in living a life framed by limitations and restrictions, where isolation is a common issue. This guide provides inspiration, advice on emotional coping, and guidance on living your best life with chronic illness from someone who’s been there. Though it seems impossible at first, your life will eventually settle into a new normal, and while that life may be different than the one you had planned, it can still be a vibrant, fulfilling life based on strong relationships, a healthy emotional state, and finding joy in every day. The emphasis in this book is on LIVING your life, not just enduring it.

ORDER NOW!

On Amazon:

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Order in Print - COMING SOON!

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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.

Suzan Jackson is a freelance writer whose work focuses on topics related to health, family, travel, and media reviews and has appeared in many magazines, websites, and anthologies. She has had ME/CFS, an immune disorder, since 2002, and also has Lyme disease. Both of her sons also became ill with ME/CFS in 2004. Her younger son is now fully recovered, after 10 years of mild illness. Her elder son, who recently graduated from college, still has ME/CFS as well as three tick-borne infections. Sue and her sons managed to improve their conditions with a number of treatments. She runs several support groups, both online and locally, to help others. Sue writes two blogs: Live with ME/CFS (this one!) and Book By Book. You can see Sue's other published work at her writer’s website, www.suzanjackson.com, and follow her on Twitter at @livewithmecfs and on Facebook.

TV Tuesday: Lincoln Rhyme: Hunt for the Bone Collector

My husband and I were thrilled to see that NBC was bringing one of our favorite book series to the small screen this winter: the series of mysteries/thrillers by Jeffrey Deaver, starring paraplegic criminologist Lincoln Rhyme. The new series is called Lincoln Rhyme: Hunt for the Bone Collector, referring to the main character and the title of the first book in the series. Featuring a great cast and suspenseful mysteries, we are thoroughly enjoying this new show so far.

In the beginning of the first episode, we see how Lincoln Rhyme, played by Russell Hornsby, came to be in his current state, confined to his home. While tracking a serial killer dubbed The Bone Collector, the killer gets the best of Lincoln, and the detective ends up falling from a height flat on his back and unable to move, as the killer taunts him and sneaks away. The show then flashes forward three years to the present. Lincoln is confined to his home, able to move only his head and a few fingers, aided by a lot of expensive electronic systems and a nurse. When a series of murders in the city appears to indicate the return of The Bone Collector, Lincoln's old boss Michael Selitto, played by Michael Imperioli, consults with Lincoln. Lincoln chooses a young NYPD officer, Amelia Sachs (played by Arielle Kebbel), to wear a body cam and investigate the crime scenes with him watching from home. With that, the partnership between Lincoln and Amelia is born. In each episode, the two investigate a difficult case, along with a forensics team and Detective Selitto, but all the while the threat of The Bone Collector (who seems to have gone back underground) is in the background.

So far, the show is an excellent recreation of the outstanding novels. The characters are slightly different than as described in the books (my husband says they didn't make Lincoln nearly cranky and mean enough), but the essence of the stories is here: a brilliant but paralyzed forensic criminologist paired with a young female police officer solving unsolvable crimes. Each episode presents a new case that grabs the team's attention, while the tension around The Bone Collector slowly builds. The audience can see who the Bone Collector is and what he's doing, so that adds to the suspense. When the killer makes it clear that he knows who Amelia is and targets her family, as he did years ago with Lincoln's, the stakes are even higher. The weekly mystery plots are twisty and compelling, the cast is outstanding, and the suspense keeps growing. We've watched the first three episodes so far and can't wait to see more--Lincoln Rhyme has quickly become one of our favorite TV shows that we wait for each week!

Lincoln Rhyme airs Fridays at 8 pm Eastern time on NBC. We watch it On Demand, and for now, all three episodes are also available for free on the NBC website. It is also available on Amazon for $1.99 an episode or $19.99 for the full first season.

First ME/CFS Pediatric Population Study Published

Big news! A long overdue first-ever population study of kids and ME/CFS was just published in the journal Child and Youth Care Forum. It's full title is The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample and you can read the abstract here (or pay for the full text). There is also an excellent, brief summary of the study's findings in Science Daily.

A population study scientifically estimates what percentage of the population has a certain disease, in this case ME/CFS in kids. This is big news because when the CDC conducted two previous population studies on ME/CFS (the second one estimating about 2 million adults in the U.S. have the disease), they left out kids entirely; both of their studies focused only on those 18 and older. Those of us with kids with ME/CFS have long seen the desperate need for a population study of kids, to help educate the medical profession (and the public) that this devastating disease does affect children and teens.

 A few highlights from the findings of the study:

• Researchers, led by longtime ME/CFS researcher and advocate Leonard Jason, screened 10,000 children and teens (ages 5-17)  in the Chicago area (population studies like this start with phone surveys that lead to more intensive medical work-ups for those who meet certain criteria).
• 0.75% of the children in the study had ME/CFS-- that's more than a half million children in the U.S.
• Startlingly (though not surprising to patients!), 95% of the children identified as having ME/CFS had not been diagnosed. Only 5% had been accurately diagnosed.
• African-American and  Latinx kids were slightly more likely to have ME/CFS and even less likely than Caucasian children to have been diagnosed.

You can read a full summary of the study's results in Science Daily. Be sure to share this article with your own doctors, school nurses, teachers and administrators!

Weekly Inspiration: When Difficult Times Hit

This is going to be a quick post today, relying mostly on previous blog posts. My energy and stamina have been poor recently. I'll write more about the details here on the blog this week, but the bottom line is that my Lyme disease is back again. It tends to go dormant for years at a time (though only about 15 months this time) and then suddenly flare up. I didn't catch it quickly this time because the joint pain was centered in one hip instead of my knees, as is typical for me. So, I've been dealing with excruciating pain for weeks. It's given me a whole new respect and appreciation for those who live with chronic pain all the time! Now that I figured out it's Lyme and have re-started treatment, I am getting better, bit by bit, but it's been a very challenging time for me. So, here are some previous posts with tips and ideas on dealing with stress and finding joy when your life is very restricted:

In These Are a Few of My Favorite Things, I was just recovering from a bad crash--similar to now--and I comforted myself by listing things that brought me joy. Just re-reading this list lifts my spirits! In this ProHealth article, Finding Joy in Every Day, I dive more deeply into the topic, including my approach of keeping a Joy Journal.

Yes, that's a groundhog in my son's oatmeal - Happy Groundhog Day!

In this post, Joy of Celebrations, I write about our traditions of celebrating even the most minor of holidays (Happy Groundhog Day today!). While it may seem counter-intuitive to celebrate when you are feeling down and out, a small-scale at-home sense of fun and celebration can really lift your spirits, especially when every day feels the same. Today, besides being Groundhog Day (an excellent day to re-watch the warm and funny Bill Murray movie, Groundhog Day), is also Superbowl Sunday. Usually it is just my husband and I, but we still have our own little Superbowl party, with favorite snacks, enjoying the game--and more importantly, the commercials! Luckily, I am feeling better enough today that we have two good friends coming over tonight to join the fun. I will be in my own house, in the recliner and/or on the couch, so it will still be low-key and low-energy for me, but I am looking forward to this little celebration.

When I feel as incapacitated as I have the past few weeks, it is hard for me to slow down and truly rest; I fight the need to be productive all the time, even when I know I don't have the energy. This week, I mostly watched TV when I needed some downtime. You can check out all of my TV show reviews if you are looking for a new show to grab your interest and occupy your restless mind. For some recent highlights, check out Favorite TV Shows Reviewed in 2019.

Books are always a HUGE comfort to me, and I set aside quiet time for reading every single day, before my nap and before bedtime at night. I write a book blog, Book by Book, which features reviews of books I have enjoyed each week. I also included lots of book recommendations, plus tips for those who can't read easily due to cognitive problems in my article, The Joy of Reading. For more book recommendations, check out my Best Books Read in 2019 post.

My Weekly Inspiration post, Laughter is the Best Medicine, featured TV shows, movies, and books sure to make you laugh and forget your problems for a bit. Laughter really does have positive physical effects, improving immune function, relieving stress, and relaxing you. Plus, it's fun!

Another Weekly Inspiration post, Listen to Podcasts, points to another great way to entertain and distract yourself (or learn something new!), even when you are stuck on the couch or in bed. The post lists some of my favorites.

Oops - this was supposed to be a short post! My husband is up now and it's time for breakfast, but I hope these ideas will inspire you to lift your spirits and find some joy each day.

I'd love to hear YOUR ideas! How do you cope when intense stress and/or a crash hit? What are your favorite uplifting TV shows, movies, books, and podcasts? Please share your ideas in the comments below.

Happy Groundhog Day and Superbowl Sunday!