Tuesday, October 03, 2023

TV Tuesday: And Just Like That ...

Back in July, my husband went away for a week to play golf with his two best friends from high school in their hometown. Major Oklahoma road trip for him, and major alone time for me! I was searching for the perfect TV show for me to watch on my own, and after several false starts, I finally settled on And Just Like That ..., the sequel/reboot of Sex and the City. This show didn't even occur to me at first because--admission time--I never watched Sex and the City! I missed that whole 6-year-long pop cultural phenomenon (I was busy with my kids), though of course, I heard about it and recognized the four actresses who starred in it. But I gave And Just Like That ... a try because it was about women my age (ish). While it's not a perfect show, I enjoyed watching it during that week alone and during lunch on golf days since.

Carrie Bradshaw, played by Sarah Jessica Parker, was at the center of Sex and the City, and she is back here, along with two of her best friends from that previous show: Miranda, played by Cynthia Nixon, and Charlotte, played by Kristin Davis (Samantha has moved away). At the start of the first season, all three of them are married (presumably to the men they ended up with at the end of Sex and the City) but not all are happy. I'll avoid spoilers here, though I already knew what happened in the first episode from seeing it on the Today Show! They each make some new friends, too. Dr. Nya Wallace (played by Karen Pittman) is the Black law professor in Miranda's new program at Columbia. Che Diaz (played by the wonderful Sara Ramirez of Grey's Anatomy fame) is a non-binary, bisexual, half-Mexican podcaster, who asks Carrie to be on her podcast discussing sexuality (the show's new version of Carrie's old newspaper column). Miranda is quite taken by Che when she meets them. Lisa Todd Wexley, a very accomplished, wealthy Black woman played by Nicole Ari Parker, is Charlotte's new mom friend from the private school their kids attend. And Carrie ends up befriending her real estate agent, Seema Patel, played by Samita Choudhury. As the show moves forward, all of the women deal with their own highs and lows: divorce, death of someone close, sexual wondering/awakening, dealing with teen kids, work-life balance, and more. They are also dealing with the more minor aspects of aging, like hair turning white. 

I watched the two seasons that are currently available and enjoyed getting to know these characters. I made a point in my description above of pointing out the race or ethnicity or sexuality of some of the new characters because it felt so obvious to me that the show was making a concerted effort to update itself and become more diverse. I'm guessing the original show was pretty focused on the four white privileged women at its center? Don't get me wrong--I was happy to see a diverse, interesting cast, but it sometimes feels a bit forced here. And, almost all of them are still quite wealthy and privileged! But I enjoyed most of the characters, old and new. It was refreshing to see some of the issues and situations of 50-ish women get some attention on TV; that's a rare thing. The characters all get their own storylines, background, history, and dreams (even the newer ones), but somehow it didn't feel like too much. I'm assuming, from the title, that the original show was quite outspoken about sex, and this one is, too. This is not a show for the faint of heart or the easily offended! From gay sex to teen sex and much, much more, this is a very open, honest, sexual show. Overall, it's not a perfect show, but it was enjoyable entertainment for me and a refreshing change of pace.

There are currently two seasons of And Just Like That ... available on Max (formerly HBO Max). A third season is coming in 2024, according to IMDb.

Sunday, October 01, 2023

Peace and Tranquility in Nature

In my book, I included a chapter, The Restorative Power of Nature, that details the scientific evidence that time spent in nature has measurable positive effects on both mental and physical health. That chapter also includes tips on how to bring nature's benefits into your own life, no matter how restricted you are; studies show that even looking at pictures of nature provide benefits. You can read an earlier version of that chapter/article here on the blog. With that in mind, I wanted to share some photos and video of some of my own recent time spent outdoors, which provided a much-needed respite in the midst of a busy month.

First, in spite of weeks of rain, we managed to get out for a couple of nights camping. It was a tight squeeze, with everything else we've had going on, but those two days of complete relaxation outdoors were worth the rush to get there. We took our pop-up camper to a beautiful state park in Maryland, less than an hour from our home. With views from our campsite of the Elk River and expansive views of the Chesapeake Bay near the historic lighthouse, we soaked in all the sights and sounds of nature. Here, I put together a video of photos from our short trip. View on YouTube or below:

Expand the view to full-screen, and you can also enjoy the peace and tranquility of nature!

Just a few days after that camping trip, we met our sons (and one girlfriend) at a rented lake house for the weekend. Unfortunately, the weather did not cooperate, and a tropical storm sat over the area for much of the weekend (and the following week!), but Friday evening was beautiful. My husband and I got the kayaks out on the lake, and we all enjoyed a stunning sunset over the water. In spite of the rain, the rest of the weekend was super-relaxing, and we loved having that time together as a family. A few photos:

I find being near the water especially peaceful and restorative.

Have you been able to spend any time outdoors lately?

Or even just looking at nature through your windows?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Wednesday, September 20, 2023

Excerpts from My Book on Living with Chronic Illness

I am home briefly in between trips - three trips in 10 days' time! It's a busy month with a lot of family stuff, so I thought I would share some videos here today.

Since I started my YouTube channel in February 2021, I have made quite a few videos based on chapters from my book, Finding a New Normal: Living Your Best Life with Chronic Illness (available everywhere, in print and e-book, and more info on the book at that link). This book is meant for anyone living with any kind of chronic medical condition, with a focus on emotional coping, daily living, healthy relationships, and figuring out what your best life is, within your own restrictions and limitations.

I recently made a couple of brief videos (YouTube Shorts, under 1 minute each), with a quote from the beginning of two chapters:

Who Do You Tell and What Do You Say? - all about deciding what to reveal and to whom about your medical condition.

The Hidden World of Invisible Suffering - how chronic illness showed me a hidden world with lots of people facing challenges others don't see.

And these are longer (12-25 min) videos, based on full chapters from my book:

Get Out! Nature Improves Health - based on the chapter, The Restorative Power of Nature, includes some photos and videos of nature, plus tips on how to enjoy and get the benefits of nature, no matter what your limitations.

A Plan B Day - a useful concept with specific steps to help you prioritize, reduce stress, and listen to your body.

You're Right Where You Need to Be - how techniques like acceptance, giving in, and living in the present can help you to live your best life with chronic illness.

Finding Joy in Every Day - simple habits that can help you to identify the small joys in your everyday life and create more of those moments, to improve your quality of life and happiness.

What Are You Looking Forward To?one simple tip I learned from a wonderful psychologist that can help when you are feeling stuck in a rut.

Celebrate Everything, Big and Small - when you celebrate the small stuff - with minimal effort! - you add joy to your life and give yourself and your family something to look forward to. It's fun! 

So, I hope that will provide some useful information to you while I'm away.

What tips and strategies help YOU live with chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.


Tuesday, September 19, 2023

TV Tuesday: Daisy Jones and the Six

Last December, I read Daisy Jones and the Six by Taylor Jenkins Reid (my first novel by the popular author), and it surprised me in a good way. So, when the TV adaptation was released this spring, my husband (who had not read the novel) and I watched it together. We both enjoyed the show very much, and it was fun for me to see the characters and music come to life on the screen.

It's the story of a 70's rock band, from it's humble beginnings in Pittsburgh to its skyrocket to fame in California to its sudden, unexplained demise. But it's also the story of its two lead singers who were both passionate, charismatic, damaged people: Billy Dunne and Daisy Jones. As with the novel, the story is told in hindsight, as an oral history of the famed (fictional) band, based on interviews with its members and other people who were involved. So, from the very beginning, you see the band members as they are today, talking about their propulsive rise to rock icons. The whole thing began with Billy Dunne, played by Sam Caflin, and his brother, Graham (played by Will Harrison) pulling together a band in their hometown of Pittsburgh with their friends. Their band was called the Dunne Brothers, and after playing some local and regional venues and slowly growing over the course of six years, they were noticed and invited to record their first album. The band's members had changed a bit over the years, finally comprising Billy as lead singer, Graham on lead guitar, Warren (played by Sebastian Chacon) as the easy-going drummer, Eddie (played by Josh Whitehouse) as the ever-resentful bassist who wanted to be lead guitar, and keyboardist Karen (played by Suki Waterhouse). After moving to L.A. and being renamed The Six, they recorded an album and went out on tour, living the wild rockstar life. Billy, in particular, got out of hand, with excessive drinking, drugs, and women, in spite of his beloved (and pregnant) wife, Camila (played by Camila Morrone), back home. Meanwhile, a young girl who had named herself Daisy Jones (played by Riley Keogh) grew up in that world of rock and roll, first as a groupie, but with dreams of being a star herself. Eventually, their mutual manager, Teddy Price, played by Tom Wright, brought Daisy's raw songwriting and singing talents to The Six, and there was instant chemistry between Billy and Daisy. Billy, though, was reformed by then and fully committed to Camila and their daughter. That passion and tension are at the heart of this band, as Daisy's inclusion takes them from moderately successful to global superstars.

It was really fun to see this novel as a TV series because while I was reading it, I kept wishing I could hear the music, which is at the heart of the story. The casting here is excellent for all of the characters, but Sam Caflin and Riley Keogh as Billy and Daisy really make their larger-than-life roles feel real (Riley is the granddaughter of Elvis Presley, so charisma and musical talent run in her family). The show is filled with catchy, original music; the band's full album, Aurora, is brought to life in recording sessions and scenes on stage. The story encompasses both the personal lives of the band members as well as the band's meteoric rise to fame, with spotlights on Billy and Daisy. My husband and I were both fully immersed in this fictional rock band's story and enjoyed going along for the ride.

Daisy Jones and the Six is available on Amazon Prime.

Monday, September 11, 2023

Movie Monday: Air

Last weekend, we decided to watch a movie, and I suggested Air. My husband said, "I really don't have any interest in a movie about sneakers." I told him I didn't either, but I'd heard it was a good movie. So, we popped some popcorn and watched it! We both enjoyed this entertaining movie with an all-star cast very much.

Air is based on the true story of how the concept behind Air Jordans revolutionized the athletic shoe industry and changed Nike from being last among its competitors in basketball shoes to the undisputed leader (not to mention earning many millions of dollars). In 1984, Rob Strasser, played by Jason Bateman, is working in marketing in the lagging basketball division of Nike. Sonny Vaccaro, played by Matt Damon, works in a unique position in the group, as a talent scout, going to high school and college games around the country, looking for upcoming new talent to convince them to wear Nikes on the court. Nike is losing this race, though, with most pro basketball players wearing Converse or Adidas shoes. Then Sonny spots a young Michael Jordan and sees something special in him, something that no one else has noticed yet. The basketball team at Nike usually chooses three or four players to sponsor, but Sonny goes to Nike CEO, Phil Knight, played by Ben Affleck, and convinces him to spend their entire budget on this one young, inexperienced player. When Jordan's agent won't work with him, Sonny goes right to the center of power: Michael's mom, played by Viola Davis. Sonny shows up at their house and talks with Michael and his parents, just asking them to hear him out. They agree to come into Nike to hear their pitch (over the complaints of a very angry agent!). Now Nike needs something spectacular to lure the Jordans to Nike. Sonny comes up with the wholly new idea of designing a shoe around Michael Jordan and works with shoe designer Peter Moore, played by Mathew Mayer, to make it happen. The rest is sports and pop culture history!

In case I wasn't clear up front, I have absolutely no interest in televised sports, basketball, sports icons, or athletic shoes. But I loved this movie. That top-notch cast is paired with great writers (and the incredible true story) to create an engrossing, gripping drama. In spite of not really caring about the subject matter, my husband and I were both rooting for the team at Nike and got caught up in the excitement of their ground-breaking approach. Sonny, with his enthusiasm and vision, is an especially likable character. And the nostalgia here is wonderful! The 80's clothes, cars, TV ads, and setting are backed up by an awesome 1984 soundtrack. We were thoroughly entertained by this compelling movie.

Air is now streaming, available on Amazon Prime.

Thursday, September 07, 2023

NEWLY UPDATED: Treating Yeast Overgrowth (Candida)

Yeast overgrowth (sometimes called candida) is a very common problem in people with ME/CFS, Lyme disease, and long-COVID, though many patients are unaware of it or the severe effects it has on their symptoms. The specific type of immune dysfunction in ME/CFS and long-COVID allows yeast or candida (a normal, natural fungus that occurs in the body) to over-populate and cause symptoms that can greatly worsen these conditions. In addition, bacterial infections are common in ME/CFS and long-COVID and often require antibiotics--as does Lyme disease--that can kill off the body's natural probiotics, allowing yeast/candida to grow out of control. Patients may be unaware that they have yeast overgrowth, but it can cause severe fatigue, brain fog and other cognitive dysfunction, flu-like aches, sore mouth/throat, and other symptoms.

In spite of many years of treating yeast overgrowth effectively, mine recently flared up badly this summer (probably due to sugar and refined grains sneaking back into my diet!). In spending the past few months working with a variety of doctors to get my yeast overgrowth back under control, I realized that I could update my blog post on Treating Yeast Overgrowth (Candida) with some new information and new treatments, based on what helped me and what I learned from doctors and research. So, check out that newly updated post, which explains how to tell if you have yeast overgrowth, with a long list of possible treatments to get it under control.

I also updated a couple of blog posts that linked from that one, with yummy recipes for candida-friendly treats:

In addition, last year I updated my post on Eating Paleo for Immune Disorders: Our Approach, which is also essential for controlling yeast overgrowth, with information on all the reasons why this type of diet is so effective for us, how to eat Paleo, and loads of recipes and ideas for easy, healthy meals and snacks.

So, all together, those updated blog posts should help with managing yeast overgrowth, which will help to improve all symptoms. I always forget just how important it is to keep yeast overgrowth under control and how much better I feel when it is controlled. This summer reminded me of that important lesson once again, so I wanted to share that information with you.

Do you struggle with chronic yeast overgrowth/candida?

What treatments for yeast overgrowth have most helped you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Friday, September 01, 2023

Chronic Illness Tracking: Symptoms, Treatments, Exertion & How I Feel

For over 21 years now, I have used a simple system to track important aspects of my chronic illnesses at the end of each day: how I felt, my exertion and stress levels, any unusual symptoms, and stopping/starting/changing treatments. I just take five minutes to jot down a few numbers and a few notes on a calendar before bed. Over the years, this data has helped me to get diagnosed, find patterns in my symptoms (including how much exertion or stress leads to a crash/PEM), and figure out whether or not treatments are helping.

In this brief new video, I explain how and why I do this, so that you can set up your own tracking system that works for you. You can watch it on YouTube or below:


My system is still mostly paper-based (other than heart rate tracking and step counting), so if you use apps or other electronic means of tracking, I'd love to hear about it.

How do YOU track symptoms and other aspects of your chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Monday, August 28, 2023

Movie Monday: Are You There, God? It's Me, Margaret.

Back in July, while my husband was in his hometown in Oklahoma golfing with his two closest high school friends, I invited my own childhood friend, Michelle, to visit for the weekend. We talked nonstop and had a great time being back together. In the evening, we thoroughly enjoyed revisiting our shared childhood with the movie adaptation of Are You There, God? It's Me, Margaret, that coming-of-age classic novel by Judy Blume for every girl born after 1950.

In case you somehow missed this childhood rite of passage, as the story opens in 1970, eleven-year-old Margaret (played by Abby Ryder Fortson) is devastated to come home from summer camp to find out she and her parents are moving from their New York City apartment to a home in New Jersey. Margaret's Jewish grandmother, Silvia (played by Kathy Bates), is even more upset because she and Margaret are close and spend a lot of time together. As her dad, played by Benny Safdie, and her mom, played by Rachel McAdams, unpack boxes in their new suburban home, Margaret begins to meet some of the kids her age in the neighborhood. Nancy, played by Elle Graham, is a little overwhelming at first, but she's very welcoming to Margaret, saying she can be the fourth in their group of best friends, and Margaret is both impressed and intimidated by Nancy's confidence and sophistication. As Margaret's mom, who is an artist, struggles to fit in with the other suburban mothers, Margaret experiences all kinds of firsts--first bra, first boy-girl party, first kiss, first period--along with the exciting and frightening onset of adolescence. She visits her beloved grandma in New York, and she struggles to figure out what religion she wants to be (her mom was brought up Christian, so they say it is Margaret's decision). All of these classic coming-of-age moments are set against the nostalgic backdrop of 1970's suburbia.

This novel was first published in 1960, and it seems like Judy Blume made the right decision to wait until now for a film adaptation. Director Kelly Fremon Craig does an outstanding job of bringing this beloved icon of adolescence to the screen. The 1970's fashions, furnishings, hairdo's, music, and sets bring that era to Technicolor life with great authenticity. It's the perfect backdrop for Margaret's struggles with growing up, which girls today can still relate to. The cast is wonderful, with young Abby creating a Margaret who is exactly as we imagined. Rachel McAdams is excellent as a mom struggling to fit in with the other parents (I don't recall if that was a part of novel, but it works perfectly here, with all us grown-ups watching the film), and Kathy Bates is her usual fabulous self as Grandma Sylvia. The adaptation is faithful to the original book (as best as I remember, anyway), including the important focus on Margaret's struggles with religion, as she talks to God in her own way. My friend and I were delighted with this nostalgic step back in time and recreation of one of our favorite books. It was fun, joyful, funny, and worth the decades-long wait!

I highly recommend inviting your childhood best friend over to watch this movie--or calling her up to watch at the same time while on the phone.

Are You There, God? It's Me, Margaret. is currently available to rent on Amazon and several other streaming services.

Michelle and I as kids in 1971, and last month when she came to visit:


Sunday, August 27, 2023

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?

Tuesday, August 22, 2023

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.

Thursday, August 10, 2023

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!

Friday, August 04, 2023

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.


Tuesday, August 01, 2023

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.

Thursday, July 20, 2023

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.

Monday, July 17, 2023

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 currently showing only in theaters. It is estimated that it will begin streaming on Disney+ around mid-August.

 See where it's playing near you:

Go Fandango!

Sunday, July 16, 2023

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.

Wednesday, July 05, 2023

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:

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.

Friday, June 30, 2023

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

glutathione molecule

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.