Beyond the Cul-de-Sac

A beautiful day by the creek

My husband gets credit for the title of this blog post. When I asked him this morning if he wanted to take a walk after breakfast, he said, "Beyond the cul-de-sac?" and then, "That would be a great name for a blog post." So here, it is!

The significance of that phrase is that I've been struggling all summer--really most of the past year--with low energy and more fatigue than usual. Between trying to find the right combination of treatments for my hypothyroidism, and my battles the past few months with severe yeast overgrowth, my energy and stamina have been much lower than usual. So, my daily walks have mostly been around our cul-de-sac--yup, exciting, around a small circle! When I feel I can manage a bit more, I walk our cul-de-sac and the next one over, but any further in our neighborhood involves too many hills. Once in a while, if I'm out for a medical appointment, I stop at a local paved walking path and stroll the flat parts, about 10-15 minutes.

So, that's why my husband was excited when I proposed a walk today "beyond the cul-de-sac"! We drove to a beautiful creek-side path we love. It's very flat (my heart rate barely went above 90), and we walked slowly. The humidity dropped today, which is why I suggested a walk, and this spot is so peaceful and restorative. I love listening to the sound of the bubbling creek alongside us. 

As I explain in my book, scientific studies show that time spent in nature provides measurable improvements in both mental and physical health--it even improves immune function! Studies also prove that even looking at pictures of nature can produce some of these beneficial results. So, here's my gift to you on this beautiful Sunday. If you're not able to get out and enjoy nature where you are, I will share ours with you here (and to hear the water and see the sunlight, check out my video short):

Someone left behind some nature artwork!

Cool and comfortable in the shade

My happy place

Looking down-creek

And up-creek

A lovely morning along the water!

How do YOU enjoy nature?

TV Tuesday: Togetherness

Last month, when my husband was away for 10 days, I was searching for a "me" show to watch without him. He and I watch most of our TV together, and we both enjoy mysteries, thrillers, sci fi, and medical or legal dramas. So, I was looking for something I'd love that he wouldn't be interested in, maybe a relationship drama (but I with a sense of humor, an important element for me). I found just the thing in Togetherness, an HBO (now Max) show from 2015-16.

Melanie Lynskey and Mark Duplass star as Michelle and Brett Pierson, a married couple with two young children living in L.A. Brett works as a sound engineer in movies, and Michelle is a stay-at-home mother, but both are feeling stuck in a rut after ten years of marriage. Michelle's sister, Tina (played by Amanda Peet), moves in with them. Tina is at loose ends, wanting to be in love and maybe have a family, but with no prospects in sight and starting to worry she's getting too old. Then Alex, played by Steve Zissis, also moves into their now crowded little house. Alex and Brett have been best friends for decades, and Alex is an out-of-work actor who is out of shape and worried that his career is a flop. The four adults--each spinning out in their own way--are all struggling with each other and with their own lives. It's clear that Alex is beginning to fall for Tina, but feels way out of her league and firmly in the "friend zone." Both Alex and Brett are looking for more exciting (and secure) jobs in the movie industry, so Tina offers to help Alex get in shape with her own homemade boot camp. And Brett and Michelle are fighting a lot and having more and more trouble connecting with each other, sexually and emotionally. 

If all of that sounds depressing ... it's not, because of the wonderful sense of humor woven throughout the script. All four of the main actors and the supporting cast (even the kids) are excellent and fully inhabit their roles here, making you feel like you know them. There is great chemistry between the cast members. And many of their problems are very relatable; these are regular people struggling with regular lives. The humor in the show is not in-your-face sitcom humor but a gentler, clever wit that often made me smile or laugh. That comes from the top-notch writing. The show was written and directed by Duplass Brothers Production (actor Mark Duplass and his brother, Jay) and created by them and Steve Zissis, and it is clear that they've put their hearts and souls into the show (I see their production company is also responsible for Somebody Somewhere, another favorite of ours). I just finished the second and final season yesterday and thoroughly enjoyed every moment, including the satisfying ending.

Togetherness is an HBO original which is available on Max or through Amazon or Hulu.

New Research & Resources on ME/CFS and Long-COVID

I currently have 18 tabs open on my laptop browser, and most of them are new research on ME/CFS, long-COVID, Lyme disease, and related topics that I wanted to save to tell you about! So, I think it's time to pull some of this information together for you and clean up my browser a bit. 

And that's the really good news: there is so much exciting research going on right now, being reported each week! It's hard to keep up with it all, so let me help you with some quick recaps, with links to more information:

Helpful Resources for Patients (and Doctors, too):

Last week, I wrote a whole post about Resources for Educating Doctors about ME/CFS and Long-COVID, so be sure to take a look at that, too. Here are a few additional resources that I've found helpful as a patient:

• Heart Rate Variability from the Bateman Horne Center (led by Dr. Lucinda Bateman, one of the top ME/CFS specialists in the world) - this simple one-page information sheet explains what Heart Rate Variability (HRV) is and how it can help you track how well (or poorly) your autonomic nervous system is functioning. This is another easy way track how you are doing, with hard data, in addition to heart rate and steps taken (see my video and blog posts on Measuring Limits with Heart Rate Monitor and Step Counter). I'd heard that HRV was important but didn't understand it - now I do! I have set up my Apple Watch to track HRV daily, as well as heart rate and steps taken - just another tool to measure when I need to rest and when I am doing OK. Share this with your medical professionals, too!
• Physiology of Post-Exertional Symptom Exacerbation - this video from Dr. Todd Davenport explains the latest scientific findings about why exertion makes us worse and what is going on in the body of someone with ME/CFS or long-COVID when we are active that causes the characteristic crash. Dr. Davenport is one of the top experts in this field, and I had the pleasure of "meeting" him when we were both participants in a set of informative videos about using heart rate monitors in ME/CFS (Part 1 and Part 2), intended for both patients and physical therapists/physios.
  

 

New Research Advances and Updates

• "Blood Tests for Chronic Fatigue Syndrome," an article in Drug Discovery News. This article, which is written in clear layperson language, describes the need for biomarkers and diagnostic testing for ME/CFS, and three of the best possibilities from recent research. You can't go into your local lab to get any of these tests yet, but the progress and the focus of these researchers is encouraging. This is also a great article to share with any doubting doctor (along with the Resources for Education Doctors about ME/CFS and Long-COVID).
• "Circulating MiRNAs Expression in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" - directly related to the article above, microRNAs are one possibility for future biomarkers/tests to diagnose ME/CFS. In this case, the focus was on how miRNA gene expression specifically for activated HHV-6 infections (common in ME/CFS) could differentiate ME/CFS patients and healthy controls. This short abstract describes the findings.
• "Nicotine applied by transdermal patch induced HSV-1 activation and occular shedding in latently infected rabbits" - I wouldn't normally call attention to an animal study but this one was disturbing, eye-opening, and definitely relevant to ME/CFS patients. We are known to have reactivated herpes-family viruses in our bloodstreams; the specific kind of immune dysfunction of ME/CFS and long-COVID causes these old (latent) viruses to reactivate. There has been talk among long-COVID patients on Twitter of using nicotine as a treatment. Given this evidence that it could cause further activation of herpes-family viruses, I would pass on that one (not to mention how addictive it is).
  
• "Convergence: How Gut, Immune, and Metabolic Issues May Be Producing PEM in ME/CFS" - this excellent article, written for patients, is by Cort Johnson, a patient himself and long-time expert in summarizing research for the patient community. It's his layperson summary of a recent research study, "Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in myalgic encephalomyelitis/chronic fatigue syndrome" (see why we need to Cort to translate this for us?). As Cort explains, the ground-breaking aspect of this study was how it brought together immune dysfunction, gut issues, and metabolic dysfunction and connected them all to the hallmark exercise intolerance of ME/CFS (and long-COVID, too). See the right-hand column for a shorter, simpler summary under "The Gist." This is exciting research! I plan to share this with our functional medicine specialist.
• "The Paxlovid Possibility: Antiviral Drug Found Protective Against Long-COVID" - another excellent article from Cort Johnson summarizes a recent study from the Veteran's Administration--of 9000 patients!--showing that using Paxlovid early on in COVID-19 infection reduced incidence of long-COVID by 25%. Cort explains the study's findings and what it might mean for long-COVID and ME/CFS in the future. Again, the sidebar labelled "The Gist" provides a shorter bullet-point summary.

That is some really exciting research on ME/CFS and long-COVID, covering some of the biggest aspects of the diseases! The future is looking brighter (and my browser is cleaned up, too). I hope these brief summaries helped to update you on what is going on in the world of research!

Resources for Educating Doctors About ME/CFS and Long-COVID

There are several new publications, in addition to some helpful older ones, available to help patients educate medical professionals about ME/CFS and long-COVID and especially the exertion intolerance that defines these conditions. These documents, guides, and videos should absolutely be shared with your primary care doctor or GP, but they are also helpful for other medical professionals. You can share these with any specialists you see, like neurologists, cardiologists, or rheumatologists. They are also helpful for doctors you see for routine check-ups, like OB/GYN, dermatologist, or even your dentist. And any medical professional who recommends you exercise or is involved with any kind of physical therapy with ME/CFS or long-COVID patients can benefit from knowing about exertion intolerance or Post-Exertional Malaise (PEM). All of these people in the medical profession need to understand how their own specialty fits into the bigger picture of ME/CFS and long-COVID. 

Here are some of the best resources available for sharing with medical professionals (available to download, view, or print at the links provided):

ME Factsheet (NEW and available in multiple languages) - this new document from the World ME Alliance provides a general overview of ME: what it is, symptoms, impact. It emphasizes the exertion intolerance and danger of pushing patients to be active and mentions the link with long-COVID.

Pacing and Management Guide for ME/CFS and Long-COVID (for all patients) - from #MEAction - what are ME/CFS and long-COVID with a detailed explanation of post-exertional malaise (PEM) and how it limits patients, why exercise and Graded Exercise Therapy (GET) are harmful, tips on pacing, and resources.

Pacing and Management Guide for Pediatric ME/CFS and Long-COVID - same sort of document from #MEAction, with a focus on PEM and pacing, but for kids and teens. Excellent for sharing with pediatricians, school administrators, and teachers.

Post-Exertional Malaise (PEM) Video Training Series - developed for doctors and other medical professionals by Dr. Lucinda Bateman, one of the top ME/CFS clinicians in the world, this video series explains not only what PEM is and how it affects patients but also the science behind it. It's a series of seven very short videos (2-7 minutes each). Scroll to the bottom to watch the entire series in under 30 minutes.

Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  - published scientific paper that summarizes all the research proving that exercise/exertion is harmful to patients with ME/CFS and long-COVID - perfect for the medical professional who still insists you should exercise, in spite of you explaining about exercise intolerance. Share this far and wide!

Testing Recommendations for Suspected ME/CFS - from the U.S. ME/CFS Clinician Coalition, the cooperative group including all of the top ME/CFS specialists in the U.S.. They have loads of resources for medical professionals on their website - this document focuses on diagnosis and is perfect for your primary care doctor, GP, or any other medical professional involved in diagnosing you.

Treatment Recommendations for ME/CFS - also from the U.S. ME/CFS Clinician Coalition, this document outlines real medical treatments - for sleep dysfunction, orthostatic intolerance, immune dysfunction, and other aspects of the disease, based on their combined decades of experience treating hundreds of thousands of patients. It is perfect for your primary care doctor, GP, or any other medical professional involved in treating you.

Diagnostic Codes for ME/CFS and Long-COVID - as of last October 2022, ME/CFS and Long-COVID now have their very own ICD codes, the numbers doctors must include for every patient they see. The summary is at that link to print and share with your doctor. They should be using G93.32 for ME/CFS and G93.3 or U09.9 for long-COVID.

I am very fortunate to have an outstanding primary care doctor who understands ME/CFS, was the first one to accurately diagnose me, back in 2003, and has been treating various aspects of the disease in me and other patients for over 20 years. But I plan to print that new ME Factsheet to bring to my new OB/GYN next week and to give to my primary care doctor to ask her to share it with the other doctors, nurses, and physician assistants in her office.

If we all help to share this information, hopefully things will gradually change as more medical professionals understand what ME/CFS really is and how to help, not harm, patients.

 

TV Tuesday: The Diplomat

Our favorite TV show so far this summer has been The Diplomat starring Keri Russell. We normally watch TV the old-fashioned way, juggling multiple shows and watching one episode at a time, but with this one, we often finished an episode and immediately jumped right into the next! Our only complaint with this original, suspenseful, funny show was that there were only eight perfect episodes in the first season.

Keri Russell plays Kate Wyler, a career diplomat. She is expecting to be assigned as the first-ever US ambassador to Afghanistan, a position for which she is very well-prepared from her many years in the region. Instead, at the last minute, she is re-assigned to the UK, a diplomatic position that is usually mostly ceremonial, focused on pomp and circumstance. We soon see that Kate is not prepared for or happy with that kind of role; when a member of her staff asks what dress she will wear to an official event the first night, Kate explains that she packed two black suits and a burka. To complicate matters further, Kate's husband, Hal (played by Rufus Sewell), is accompanying her. Hal is also a diplomat, who has had multiple ambassadorships and is used to being in charge. He's about as happy with playing second fiddle as Kate is with being assigned to the UK. He's giving it a try to save their marriage, but Kate would prefer he were assigned to his own country, far from hers! Shortly after Kate and Hal arrive in the UK, though, things abruptly change when a UK ship is attacked, 25 people are killed, and it appears that Iran may be responsible. All of a sudden, Kate's experience in the Mideast is very valuable, and she is immersed in working with her UK colleague, Foreign Secretary Auston Dennison (played by David Gyasi), the Prime Minister (an obnoxious guy played by Rory Kinnear), and CIA agent Eidra Park (played by Ali Ahn). Events seem to be moving quickly toward all-out war, and Kate and her colleagues scramble to get accurate intelligence and make the right decisions.

The tension and suspense ramp up fast, right from the first episode, in this very high-stakes situation. That's part of why we kept wanting to watch another episode, to see what would happen next. But, surprisingly, this show is also hilariously funny and often had us laughing so hard we had to rewind a bit to see what we missed. Keri Russell, who was so good in her role on The Americans, is absolutely fabulous here: intense and focused, with a sharp wit and perfect delivery of her character's dry sense of humor. The rest of the cast is excellent, too, and the writing is just outstanding. This show kept us glued to the screen, laughing out loud, and wanting more.

The Diplomat is a Netflix original, so it is only available on Netflix.

Chronic Illness Vlog 7-16-23: Yeast Overgrowth, Heat, and Best Friends!

My chronic illness vlogs provide an honest view of my life with ME/CFS and Lyme disease, with all its ups and downs!

Last week, I was struggling with yeast overgrowth/candida, a chronic issue for many of us with ME/CFS and long-COVID due to our specific kind of immune dysfunction. Mine flared up three weeks ago, for unknown reasons, in spite of the treatments for yeast overgrowth that I keep up (diet, probiotics, supplements, and medication) all the time. I was still struggling by the end of the week, but I'm happy to report that my doctor returned from vacation this week, prescribed a stronger antifungal medication for me, and I am starting to see some improvements.

On the plus side, last week, I very much enjoyed plenty of quiet solitude at home while my husband was away, and I had a wonderful weekend with my childhood best friend, who came to visit.

You can watch the vlog on YouTube (which also includes notes under the video and links to more information) or below:

I'm planning to write a longer post about my recent experiences with both thyroid issues and yeast overgrowth, when I have more energy. 

How are YOU this week?

Do you struggle with chronic yeast overgrowth/candida?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Movie Monday: Indiana Jones and the Dial of Destiny

On a very hot recent Saturday when my energy was low, my husband and I treated ourselves to a Saturday matinee at the theater. Though the seats were modern recliners, the vibe was old-school adventure with Indiana Jones and the Dial of Destiny, which we enjoyed very much.

As this new (and last) Indiana Jones movie opens, we get a flashback scene from 1939, with a young Indiana Jones in top form, escaping from Nazis, fighting on top of speeding trains, and keeping a priceless artifact, Archimedes' Dial, out of the hands of the Nazis, along with his best friend and partner, Basil, played by Toby Shaw.  After that breathtaking scene of nonstop action, the movie shifts to 1969, as the fearless explorer archeologist is retiring from his job teaching at a university. It's clear that Indy has aged (and not well) and has left his glory days behind. His beloved wife, Marion, (his love interest from the original Raiders of the Lost Ark) recently filed for divorce, his students are bored, and he's spending a lot of time in his recliner, drinking too much. Then, his goddaughter shows up unexpectedly. Helena, played by Phoebe Waller-Bridge of Fleabag fame, is Basil's daughter, and Indy hasn't seen her since she was a young girl. Now, she's begging for his help to find Archimedes' Dial. He's reluctant at first, until they go back to the university archives, where Indy has hidden the half of the dial he and Basil rescued in 1939, and find that a group of criminals, headed up by the very Nazi that Indy was fighting on the train 30 years ago, is leaving a trail of bodies, Indy's colleagues, in their wake. After an exciting chase through the streets during a ticker tape parade for the returning astronauts, Indy and Helena take the adventure on the road, heading through Morocco, Greece, and Italy. They are searching for the missing half of Archimedes' Dial, with the bad guys hot on their heels. 

What follows is classic Indiana Jones, with action, adventure, mysteries, secret codes, and plenty of surprising twists. Yes, it's true, Indy has aged considerably, but they work with that in the film. One of the best parts about this series (in my opinion) has always been its sense of humor, and that is shining bright here. Besides, Indy has Helena by his side, and Phoebe Waller-Bridge is fabulous, loaded with the confidence, charisma, and physical prowess that makes her seem a female Indiana Jones (I wonder whether she'll star in the next movie on her own). The rest of the cast is great, too, with lots of characters popping up from earlier films. Harrison Ford himself is quite impressive, as an 80-year-old man playing a 70-year-old, and the CGI that makes him 30 years younger in the opening scenes is effective. As with earlier films in the series, the action is nonstop, the settings are gorgeous, and the plot is constantly surprising. I hated to miss a moment (but it is a 2 1/2 hour movie!). We were delighted by some of the unexpected twists the movie took. I've been hearing a few negative rumblings from critics and social media that it's just not the same without Spielberg at the helm (James Mangold directs), but we loved this movie. My advice? Get a bucket of popcorn and just enjoy this nostalgic 2+ hours of pure fun. When you hear that familiar swell of music, just let yourself be swept away and enjoy the ride!

Indiana Jones and the Dial of Destiny is available on Disney+ and for $3.99 on many other streaming platforms.  

Weekly Inspiration: From Chronic Illness Bloggers

Once in a while, I like to round up some of the wonderful inspirational posts I've seen on other chronic illness blogs and share them here with all of you. That way, you not only get motivation, comfort, and joy from a wide variety of sources, but you can discover some other great chronic illness blogs, too! Here are some recent posts that I enjoyed and found useful:

From Sheryl at A Chronic Voice

Sheryl is a good virtual friend of mine (we live on opposite side of the globe) who has a wonderful blog, loaded with chronic illness advice, inspiration, and people's stories. As a bonus, you can watch her interview of me on her podcast, Sick Lessons, when we enjoyed a great conversation about life with chronic illness, including a lot of smiles and laughter because we were so happy to finally meet "in person."

Sheryl recently added to her popular list of Chronic Illness Quotes to Inspire, Motivate, Grieve, Hope, and Laugh About. The quotes are from authors, poets, celebrities, famous historical figures, and even from herself, and each brief quote is combined with beautiful graphics. Browse through these lovely quotes for inspiration, support, and a few laughs anytime you need a pick-me-up!

 

Sam of My Medical Musings

Sam is another wonderful chronic illness blogger I've gotten to know who has multiple, complicated diagnoses. She's written a very thoughtful post, Is It Time to Wave the White Flag or Is a Plan of Attack a Better Option? It's all about the exhausting and never-ending battle we are all fighting to get accurately diagnosed and to find effective treatments that will improve our quality of life. She knows how important this process is, but considers whether we might sometimes need to take a break from it. Like all of her posts, it is compassionate, thought-provoking, and very relatable.

 

Tom Seaman

Tom has a thoughtful new post, Understanding and Improving Our Stress Response to Reduce Pain and Suffering. In it, he delves deep into the role that stress can play in chronic illness and chronic pain, and how our emotional reaction to what happens to us can worsen our physical suffering. He describes how negative emotions and stress can affect our bodies and shares his own experiences, as well as some helpful tips and additional resources.

 

Kathy of Upbeat Living

Kathy has multiple chronic illness diagnoses that dramatically affect her life, and during a recent flare, she wrote Managing the Frustration of Chronic Illness: 6 Tips. She describes some of the common frustrations of life with chronic illness and then reviews 6 practical steps that anyone can take to reduce their stress and cope with frustration. It's a great post for when you're feeling overwhelmed.

I hope you've found these blog posts useful.

Do you have any favorite chronic illness blogs?

Please share them in the comments!

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Ups & Downs, Thyroid & Yeast, Nature

My energy is very low today, due to a flare-up of chronic yeast overgrowth, but I at least wanted to share my latest Chronic Illness Vlog with you. This is an group of video clips from last week that show an honest view of my life, with all its ups and downs. And I had lots of ups and downs last week, some days feeling well enough (thanks to adjusting thyroid treatment again) to be active and some days feeling run-down or frustrated and overwhelmed ... or both!

Some of the information I mentioned in the video and included in the Notes below the video on YouTube include:

• Thyroid Tests to Request - scroll down to What Helped Me in this summary post of 2022.
• Effective treatments for yeast overgrowth/candida. I am currently doing all of this!
• Sign-up for my e-mail newsletter (goes out at the start of every month).

I'm planning to write a longer post about my recent experiences with both thyroid issues and yeast overgrowth, when I have more energy. 

How are YOU this week?

Have you had a full thyroid panel lately?

Do you struggle with chronic yeast overgrowth/candida?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

NEWLY UPDATED: Increasing Glutathione in ME/CFS and Related Illnesses

Just a quick note to let you know that I spent some time this week updated my very important post on Increasing Glutathione in ME/CFS, Long-COVID, and Related Illnesses.  

Glutathione is a naturally-occurring compound in the body that is absolutely essential for energy production, immune function, detox, and more. As you might have guessed, people with ME/CFS need lots of it but don't make enough of it. Increasing glutathione has had obvious positive effects for us, and how you get glutathione (or help your body make more) is important, since some supplements are mostly a waste of money.

I first wrote this post in 2017 and had added new notes to it and brief updates several times over the years, as I got new information or we tried new approaches. This time, I edited the whole post, fixed any broken links, checked new information, and made sure it was all up-to-date.

If glutathione is not something you have looked into before or if you'd like to know more, I hope you'll find the newly updated post helpful.

TV Tuesday: Silo

The trend of making excellent television adaptations from best-selling books continues, with Silo from Apple TV, based on the outstanding Silo trilogy by author Hugh Howey, including Wool, Shift, and Dust, a favorite series of mine and my husband.

In the first episode, we see that the world depicted in Silo all takes place underground, in a giant silo 200 stories deep. In the lowest floors, Mechanical keeps everything running, with enormous generators and other machines to make the space livable. In this society, every person has a purpose, and birth rates are carefully regulated so that the silo can continue to meet the needs of all of its citizens. Some floors contain huge farms that grow the food for everyone living there; others have schools or clothing looms or medical facilities. Sheriff Holsten's (played by David Oyelowo) office is way up on the top floor. The outside air is toxic, so giant screens in each regional cafeteria provide a depressing look at the outside world, with its gray skies and dead trees. As the first episode opens, Sheriff Holsten is being "sent out to clean," the silo's horrifying way of dealing with rebellion. Both Deputy Marnes, played by Will Patton, and Mayor Jahns, played by Geraldine James, are grieving this unexpected turn of events. Sheriff Holsten is a good man, but he has said he wants to go outside, and the punishment for that is banishment. As with everyone sent out before him including his wife, he first cleans the camera lenses for the people still inside and then collapses in a heap after just a few steps away from the silo. Much to everyone's shock, Holsten has named Juliette Nichols, played by Rebecca Ferguson, an unknown but talented mechanic from the down deep, to be his replacement. Underlying all of this are small glimpses, by both Holston and Juliette, that perhaps everything they've been told about the silo is not strictly true.

And those are the mysteries at the heart of this show (and its originating trilogy): how did the silo come to be, what happened to the outside world, and why are things inside the silo (by necessity, run under strict rules) the way they are? In flashbacks, we see first Holsten and then later in the present, Juliette, begin to dig into these questions that are dangerous to even think about. The sheriff's department is also kept busy investigating an ever-increasing spate of violence and unusual deaths that the Justice department (some scary guys on a middle floor) would like to sweep under the rug. Through all of that, we see the fascinating inner workings of this unique world: children playing, festivals and celebrations, births and funerals, and all the minutiae of daily life, lived within this limited space. As with the novels, this story is filled with suspense and lots of unexpected twists, but it also focuses in on humanity, characters, and relationships. So far (we are five episodes in), they've done a remarkable job of visually recreating this very unusual setting, and the acting and writing are excellent. This unique, gripping science fiction drama has already been approved for a second season, and we are thoroughly enjoying season one.

Silo is an Apple TV original show.

And if you have not yet read the trilogy, it's maybe the best series I have ever read! Start with Wool.

Vacation Vlog: Nature, Relaxation, Good Food ... And Feeling Good!

Last week, we went to the Catskills region of New York State for relaxed 5-day vacation. It's about a 4-hour drive from our home, and we brought our pop-up camper (home away from home). It's always so rejuvenating to spend time surrounded by the beauty of nature, but we also enjoyed some time in nearby small towns.

Here's a travel vlog that I put together, with lots of video clips and photos, so you can come along on our trip with us. You can watch it on YouTube or I'll include it here:

Scientific studies show that even looking at pictures of nature can improve your physical and mental health, so I hope you enjoy that!

Toward the end of the video, I included a short addendum after we got back home about WHY I felt well enough to manage this vacation. The day before we left, I got my latest thyroid lab results back, showing that everything was still low, in spite of two different thyroid meds and a dose increase a few months ago. My wonderful primary care physician e-mailed me on the weekend and agreed I could try going up more on the dose of one of my meds. It worked! Within 48 hours, I was feeling better, with more energy and stamina, and I was able to do more without crashing. Just in time!

I hope you enjoy coming along with us on our relaxing trip.

Are you able to travel at all, even for a weekend away?

What is your favorite kind of vacation?

Lyme Research: Genes That Could Identify Long-Term Lyme Disease

It is estimated that 20% of patients with Lyme disease (even when treated early) don't get rid of the infection and instead develop chronic symptoms (often ME/CFS) and potentially permanent neurological or cardiac damage. My son and I both fall into this category: he got Lyme in 2007, and I got it in 2008 (in addition to the ME/CFS we already had), and we both require continuous treatment even now to keep symptoms and damage at bay. In his case, he also had co-infections (bartonella and babesia) that went undiagnosed for over three years, making it even more difficult to eradicate the Lyme disease. Other people may have Lyme and/or other tick infections for years, even decades, without being accurately diagnosed or treated and are now stuck with it as a chronic condition.

New research conducted at Mt. Sinai in New York has identified 35 genes that are highly expressed in people with long-term Lyme disease. These exciting new findings could lead to diagnostic biomarkers for long-term Lyme, which is difficult to diagnose and even not believed in by some doctors. It could also potentially lead to new treatments, based on specific RNA levels in the body.

This study was conducted using blood samples from 152 patients with long-term Lyme to measure their immune response and compared to data from 72 patients with early Lyme disease and 44 uninfected controls. Researchers found a unique inflammatory gene signature that differentiated those with chronic Lyme. The researchers plan to repeat the study with additional patients and apply this same new technology to other difficult-to-diagnose diseases (note that these same technologies are currently in use in some ME/CFS studies funded by Open Medicine Foundation).

You can read more about this Lyme disease research in this press release.

Movie Monday: Missing

My son and his girlfriend were visiting Memorial Day weekend, and we were looking for a movie that all four of us would enjoy. We settled on Missing, an exciting thriller where a teen girl is searching for her missing mother.

Teen June, played by Storm Reid, lives alone with her mother ever since her father, James, died. Her mom, Grace, played by Nia Long, can be a bit over-protective, but it's clear the mother and daughter have a close relationship. Now, Grace is headed off to Columbia on vacation with her boyfriend, Kevin (played by Ken Leung), leaving June home alone. Grace's best friend, Heather, played by Amy Landecker, has promised to check in on June while Grace is away. Predictably, as soon as Grace and Kevin leave, June kicks off a wild week of parties with her friends, including her best friend Veena, played by Megan Suri. When the week is over, June heads to LAX to pick up her mom and Kevin ... but they don't show up. June begins to investigate from her phone and laptop in LA and gets more and more upset. It seems that no one has seen the couple since they walked out of their hotel room the day before, leaving all their stuff behind. June contacts the FBI, but they explain they don't have jurisdiction in Columbia. She's becoming more panicked and scared the more she discovers. Looking at social media posts, hacking Kevin's e-mail, and tapping into public video feeds from Columbia, a terrifying story begins to emerge, and the FBI and LA police do finally get involved. But no one cares as much as June, and she hires a local Columbian named Javier, played by Joaquim de Almedia, through Taskrabbit to follow-up on the ground for her. June races against time to find her mother.

The tension in this excellent movie builds quickly and never lets up. Much of the movie takes place online, as seen on June's laptop and phone, which might sound awkward but is very well done, creating a compelling story that feels like it is happening now, as you watch it unfold. The suspense is sustained throughout the film, with lots and lot of unexpected twists. I think we suspected every character except June at one point or another. The ending truly surprised us, which is quite a feat because my husband and son are both great at guessing endings and spoiling movies! The actors and writing here are also top-notch. While searching for a movie to watch that night, we thought that Searching sounded like a similar plot and approach as Missing, and it turns out that was intentional. In Searching, a father uses the digital world to search for a missing daughter, and the shared co-writers and producers of both films bill Missing as a "spiritual sequel" to Searching. I guess we'll have to watch that one next because all four of us enjoyed Missing very much.

Missing is currently showing on Netflix and is available to rent on other streaming services.

TV Tuesday: The Company You Keep

One of the new shows that my husband and I enjoyed this winter/spring was The Company You Keep. With its combination of unique crime show and forbidden love story, it is welcomingly original.

Milo Ventimiglia (This Is Us) stars as Charlie Nicoletti, the son and heir apparent of a unique family business. His mother, father, sister, and he all work together as criminals and con-men, with their working-class Baltimore bar as cover. His father, played by William Fichtner, and his mother, played by Polly Draper (of thirtysomething fame), own the bar, and Charlie and his sister Birdie, played by Sarah Wayne Callies, work there, while the whole family plans their next job in their off-hours in the basement. Birdie also has a deaf daughter named Ollie, played by Shaylee Mansfield, who is not in on the family secrets. They're a close-knit family, and they are very, very good at what they do. After a huge, $10 million score, they consider retiring from the life of crime, but the big-time drug-dealing, arms-buying crime family they scammed isn't ready to let them; they want to use the Nicolettis' unique talents to earn back the money they stole from them. One night, a beautiful woman named Emma Hill, played by Catherine Haena Kim, comes into the bar, and she and Charlie hit it off. There is instant chemistry between them and plenty of witty banter, though it is clear to both of them that the other has secrets. It turns out that Emma is a CIA agent, so Charlie must keep his criminal life even more secret than usual, as the two get closer and their physical attraction turns into a deeper love. Emma is not only in law enforcement but comes from a well-known D.C. power family, and her brother is running for the Senate (to take his father's role). What kind of future is there for a federal agent and a career criminal who come from such different worlds?

The beginning of this show is a playful secrets-and-lies love affair between Charlie and Emma, but their respective secrets are revealed to each other fairly soon in the first season. Things get even more complicated when Emma is investigating the very crime family that is blackmailing Charlie's family. The acting in this show is top-notch, with great writing featuring lots of witty banter between Charlie and Emma. Its fast-paced, fun heist plots rival any crime show but with the added fun of Charlie and Emma's opposite positions. We really enjoyed this show with its perfect mix of suspense, action, family drama, and romance.

Unfortunately, I just read that ABC decided not to renew The Company You Keep for a second season, though the final episode of season one certainly sets up plenty of threads for a continuation. I decided to still review it because this first season is a lot of fun and worth watching on its own ... and we can always hope that one of the streaming channels picks it up to continue it (as Netflix did with Manifest which comes back for a final season starting June 2).

The Company You Keep is an ABC show, so it can be viewed on cable On Demand, on Hulu, or a variety of other streaming services. It is also available free on ABC's website.

NEW Video: Correcting Sleep Dysfunction in ME/CFS and Long-COVID

I just posted a new treatment video on my YouTube channel, Correcting Sleep Dysfyunction in ME/CFS and Long-COVID. 

Sleep dysfunction is an integral part of ME/CFS and long-COVID (and often fibromylagia, too). Poor sleep makes every part of our disease worse which further worsens our sleep quality, in a vicious cycle. Thankfully, the opposite is also true: correcting sleep dysfunction so that you get normal, natural, deep sleep each night helps to improve everything! The most effective approaches treat sleep dysfunction at its source: endocrine (hormone) dysfunction. This has worked wonderfully for my son and I. We have both gotten 8-10 hours of normal, refreshing sleep every night for over 16 years now.

I posted a written article on Correcting Sleep Dysfunction here on the blog a couple of months ago. The written article is perfect for sharing with doctors, as it is research-based and includes scientific references at the end (which both prove its medical validity and provide additional resources for doctors who want to learn more). This version of the article, as originally published in 2019, is the best one to print and share with doctors.

I made the video for those who have difficulty reading and/or those who learn better through sight/sound. The video covers the same material as the written article. With complicated information, I included text, lists, and charts to help explain.

You can watch the video on YouTube or I will include it below for convenience:

If your cognitive dysfunction/brain fog prevents you from understanding either the article or the video, I recommend asking a friend or family member to read or watch so they can help you. You can also simply print the article and share it with your doctor and ask him or her to help you try some of the treatments.

Twenty years ago, after diagnosing me with ME/CFS, my wonderful primary care physician told me, "The first thing to do is to fix your sleep. That will improve everything." She was right!

If you have any questions, please leave a comment here on the blog or below the video, and I will answer. I would also love to hear about your experiences in treating sleep dysfunction and what has worked best for you.

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

ME/CFS (and Lyme) Awareness Day & Month: Help Spread the Word!

May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). You can do a number of easy things from home to help raise awareness all month long, including:

• Check out the #MEAction website for their #MillionsMissing2023, with links to different ways that you can help to build awareness, from home, by posting on social media, joining virtual events online, downloading graphics (like the one above), and more. Check out all the options at the link, including the Activism at Home page and its toolkit.
  
• Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
• Edit your profile pics on social media with a #millionsmissing frame. Here is the #MillionsMissing profile pic frame. Twibbon also has a bunch of other options, including blue ribbons, from previous years.

As mentioned, I also use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:

"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). We've gone from 2 million with ME/CFS in the U.S. in 2019 to more than 20 million (including many children) with the addition of long-COVID. Most of you know that my son and I both have ME/CFS and Lyme, but you may not know what that means. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 21 years. If you see me out in the world or even just look at my photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see me out and about when I am having a good day, and even then, I need a LOT of extra sleep, I can't get through the day without a nap, I almost always have symptoms, and I have to carefully monitor and limit my activity. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people--and very few doctors--understand ME/CFS, so Awareness Month is really important. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more. If you know a friend or family member who has or might have ME/CFS or long-COVID (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far.

https://solvecfs.org/me-cfs-long-covid/about-the-disease/ "

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. What is ME/CFS? by Solve ME/CFS Initiative
2. Facts About ME/CFS by Phoenix Rising
3. The CDC's information on ME/CFS

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know inflation has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
• Solve ME/CFS Initiative
  
• Open Medicine Institute
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

TV Tuesday: Somebody Somewhere

As I've mentioned here before, my husband is not generally a fan of comedies, so when we find one we both like, it's usually something pretty special. Our recent find is Somebody Somewhere, a hilarious show with a lot of heart.

Samantha, aka Sam, (played by Bridget Everett) returned to her hometown of Manhattan, Kansas, to care for her sister who had cancer. Now that Holly is gone, Sam feels stuck. She's part of a seriously dysfunctional family, and she feels like she personally has failed at her life. She doesn't know how to move forward. Sam gets a job at the local test center, grading student essays. Her sister, Tricia, is bugging Sam to find some purpose in her life; she runs a successful boutique shop downtown and is married with a daughter. One day at the test center, when Sam breaks into tears, another grader named Joel, played by Jeff Hiller, approaches her and tells her he's sorry about Holly. It's clear from what he says that he and Sam went to high school together, though Sam doesn't remember him. They were both in show choir together, and Sam was a swimming star as well. She never even noticed Joel back then. But now, the two misfits gradually become friends. Knowing what an amazing singer she is, Joel invites Sam to "choir practice" at his church, though it turns out to be, as he whispers to her after she arrives, "not officially sanctioned." Choir practice is a place for everyone to be themselves and to express joy, and with Joel's urging, Sam begins to sing again, rediscovering an old passion. Challenges continue to pop up--with Sam's parents, with Tricia, in Joel's life--but the two of them become very close friends and support each other, as they each grow and learn more about themselves.

This show has an intriguing, twisty plot, with all kinds of surprises along the way for Sam and Joel, but that is only a small piece of what makes it so special. It is hilariously, laugh-out-loud funny but with a deep emotional heart. If you are offended by language, sexual references, toilet humor, or--well, just about anything--this is probably not the show for you. Nothing is off-limits here! But this very funny show is not afraid to wade deep into difficult topics, from alcoholism to grief to infidelity. Through it all, Sam and Joel's friendship grows stronger, and they help each other to become their true selves and rediscover joy.

Somebody Somewhere is an HBO original, so it airs on HBO Max. We were delighted to find that we discovered it just before the premier of season two, so we were able to start the second season right after finishing the first one. We look forward to every episode, though we have to be careful if we watch during lunch--those sudden belly laughs can be hazardous while eating!

New ME/CFS Research Funding at Cornell University

Cornell University in Ithaca, NY, has received a new $9.5 million grant from the NIH (National Institutes of Health) for its multidisciplinary center, Center for Ennervating Neuroimmune Disease, which was established in 2107 to study ME/CFS. You can read all the details of how this new grant will be used in this article.

The center is run by Dr. Maureen Hanson, a longtime ME/CFS researcher who has played an important role in studying the mysterious exercise intolerance at the heart of the disease. Well-known ME/CFS clinician Dr. Susan Levine will help the studies by diagnosing patients in her NYC practice who may participate in the studies. 

The grant will be used for three main research studies, all focused on gene expression that can help to characterize the disease and understand it better:

1. Analyze gene expression in muscle biopsies, using new technology, and looking at RNA in the cells.
2. Study RNA released into blood plasma when cells die, both before and after exercise, to study post-exertional malaise and differentiate between people with ME/CFS and healthy controls.
3. Characterize gene expression in monocytes (a type of immune cell) and platelets in ME/CFS and controls to identify differences in the immune and circulatory systems. Previous work in the center identified abnormalities in these two cell types.

These are all excellent areas for further study. The better that scientists can characterize ME/CFS based on gene expression, the better they will understand exactly what is happening in our bodies. This will hopefully lead to specific ways to both diagnose the disease and treat it effectively.

The full summary about the center and its use of the grant money can be read here.

Milestone: Back on Vacation After More Than Three Years

Last week, we went on a week-long vacation for the first time since November 2019! The hiatus was due to a variety of factors: the pandemic, of course (though we vacation in our camper, so low-risk), caring for my father-in-law who had dementia, and the back-to-back relapses of my own illness the past few years.

I am finally feeling back to what I consider to be my normal baseline, where I can do more and enjoy both some physical activity and social interactions, and where severe post-exertional crashes are rare. 

In fact, I haven't had a severe crash day (let alone a week) since the end of February! Since my doctor made one last adjustment to my thyroid medications (info on thyroid testing here), I've actually been feeling quite good most days. To be clear, as with all treatments for ME/CFS, nothing is a miracle--I still need 9-10 hours of sleep a night and a nap every afternoon--but this is the best I've felt since early 2020.

(NOTE: For more information on how I was able to recover from those relapses and what helped, see my Relapses and Recoveries post).

So, back to our vacation! It was our first camping trip of the season, and we drove a bit south to Virginia, where we visited two beautiful state parks, one to the west, in the foothills, and one to the east, in the flatlands along a river that feeds into the Chesapeake Bay. The weather was perfect all week, and I was able to manage the extra daily walking (to the bathroom and back!), plus a short hike and two hour-long kayak excursions. It was a very quiet, relaxing week spent in nature with my husband. In addition, we started the week with a visit to my cousin near DC and ended the week with dinner out with an old college friend and her husband. All in all, it was a wonderful trip. 

This Vacation Vlog shows lots of video and photos of the natural beauty we experienced last week (studies show that just looking at pictures of nature improves mental and physical health, so enjoy!). You can watch it on YouTube or here, below:

See my post with lots of tips on Camping and Enjoying the Outdoors with ME/CFS. I also have tips for Air Travel with ME/CFS.

Are you able to enjoy a vacation? 

What are your tips for traveling with chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog 4-11-23: Busy Week, Mild Crash, Easter & Spring!

I haven't posted much here lately because life's been BUSY! That's a good thing in many ways because it means I am continuing to feel well. I can now say confidently that I am back to my baseline, where I was in 2019, which is pretty good. I am able to be more active, take walks again (yay!), and manage some social time without crashing. 

In  fact, we are preparing for our first week-long vacation since 2019!! That's not entirely because of my health (nor the pandemic), but due in large part to the fact that we were caring for my father-in-law who had dementia. However, I do feel excited about this trip, rather than worried, which is great! This is also our first time taking our camper out this year, and I am very much looking forward to the quiet, slow pace of a camping trip.

In my latest Chronic Illness Vlog, posted this week (recorded last week), I talk about having a busy schedule (too busy, as it turned out--I did have to leave my book group early and had a mild crash day), enjoying a wonderful Easter visit with my family, an update on my son's first full-time job (he's had ME/CFS since 2004), and as always, some lovely nature footage to immerse you in the sights and sounds of spring. You can watch it on Youtube or below:

I'll leave you with a view of what next week will be like for us!

How are YOU doing?

What was last week like for you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.