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.