TV Tuesday: Dark Matter

I absolutely love when a book I enjoyed is adapted into a TV show or movie, so I was incredibly excited to hear that Dark Matter by Blake Crouch (my review at the link) was going to air on Apple TV. This is one of my all-time favorite books, a twisty sci fi thriller, and so far, the TV adaptation, Dark Matter, is living up to its source material.

Jason Desson, played by Joel Edgerton, is happily married to Daniela, played by Jennifer Connelly, and they both adore their teen son, Charlie, played by Oakes Fegley. They live in Chicago, and Jason works as a physics professor at a small, local college. Daniela had dreams of being a professional artist, but she now works to help support their family. In the first episode, Daniela encourages Jason to go to a party at a local bar, honoring his best friend, Ryan (played by Jimmi Simpson), who just won a prestigious science award. From their conversation at the party, it's clear that Jason is just as talented but chose the path he did to support his family more reliably. Ryan asks Jason to join him in a new venture, but it would require moving to California, and Jason turns him down. Walking home, Jason is brooding over the path not taken when he is suddenly grabbed on the street and kidnapped. He's taken to a deserted warehouse by his masked captor and injected with something. The next thing he knows, he's waking up in a place he doesn't recognize, surrounded by people he doesn't know but that know him. They say he's been gone for over a year, and they're glad to see him. Jason finds out that this place has the technology to travel to parallel universes, a concept he understands because he himself did the initial research years ago, before he got married. He realizes that he is somehow in one of those parallel worlds, and he is desperate to get back to his wife and son ... but how?

As with the book, this TV show is based on a mind-blowing concept, that there are infinite worlds and that with every choice made or change in events, another variation splinters off. This isn't fantasy but science fiction, based on quantum mechanics (don't worry--it's all beyond my understanding, too!). Crouch put this fascinating concept to good use in this twisty, gripping, and thought-provoking thriller. My husband and I both loved this fabulous novel, and the TV show hews very closely to the book (much to our delight), probably due to the author being the one who created the show and did much of its writing to adapt it. Blake Crouch is adept at that, having written other TV shows, including Wayward Pines and Good Behavior (also based on his own novels). So, the writing is sharp and engaging. The actors all do a great job here, each portraying the same character in many different worlds, each one the same person but slightly different. And that plot! It's unique, suspenseful, and full of surprises. The cinematography is also outstanding for the small screen, as Jason visits Chicago in world after world (some of them apocalyptic). It's just an all-around outstanding TV show. Apple TV really seems to excel at science fiction shows (like their adaptation of Silo by Hugh Howey, coming back soon for season 2, and For All Mankind, an alternative history of the space program). We are loving this one and look forward to a new episode every week!

Dark Matter is currently airing on Apple TV. We've seen six of the nine episodes and will be watching #7 tonight. I can't wait!

I practically squealed in delight watching this trailer again:

Potential New Treatment for ME/CFS & Long-COVID Shows Promising Results

One of the top ME/CFS specialists, Dr. Kaufman of the Center for Complex Diseases in California, published a paper with a colleague in 2022 about a supplement that has shown stunning results in his ME/CFS and long-COVID patients. The supplement is oxaloacetate, and in an informal "proof of concept" study (i.e. not a placebo-controlled study), his team gave the supplement at various doses to patients with ME/CFS and long-COVID over six weeks and assessed changes in fatigue scores, using a standard scoring guideline. Results showed significant improvement in both groups of patients (22-28% in ME/CFS patients and 47% in long-COVID patients). They clearly saw that higher doses were more effective. You can read the details of their preliminary study here.

They then began a more formal clinical trial, placebo-controlled and over a longer period of time, for ME/CFS patients. That trial is in progress, but Dr. Kaufman reported on stunning interim results at an ME/CFS symposium last November. You can watch his short (14-min) video on YouTube or below:

He explains that he is mainly a clinician (treating patients), so he keeps the science fairly simple here, and it's an interesting talk. Watch for the results he presents, about halfway through. The trial has so far shown amazing results, not only in reduced fatigue levels but also in patients being able to spend more time upright (sitting or standing), rather than horizontal ... which is, of course, huge.

They are currently recruiting long-COVID patients for a similar trial through the Bateman-Horne Center. You can sign up here.

Other researchers are studying it in ALS and cancer patients, as well.

Of course, I immediately searched to find out if this supplement is available now. It is, but at the doses used in the study (1000 mg twice a day), it is very expensive, about $500 for a month. This is the exact supplement being used in the trials, with the higher dose, and available directly through the manufacturer.

Oxaloacetate is already available commercially through Amazon (and other suppliers, I'm sure), sold as a supplement for anti-aging and PMS support (interesting), but these are a much lower dose, just 250 mg per pill (so you'd have to take 8 pills a day to hit the amount used in the trials). I saw two main brands there, benaGene (looks like the same manufacturer as what was used in the trial) and Jubiliance, each with 30 pills for about $50. But since you'd have to take 8 pills a day to get the most effective dose, a bottle of 30 would only last just under 4 days, and you'd need 8 bottles to last a full month, which would cost $400. And I can't tell from the labels whether these contain the exact same molecule as was used in the trial (which specifies AEO anhydrous enol-oxaloacetate). So, I wouldn't recommend going it on your own just yet (unless you can afford the $500/month for the exact one used in the trial). I plan to wait for these latest study results to be published and hope that maybe the price will come down.

This study presents one of the most promising treatments for ME/CFS and long-COVID we've seen so far! And, while the cost is currently out of reach for many patients, it is currently available, which is pretty amazing. Keep your eye on this one! I'll report any additional news I hear about it.

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Recent Research on Orthostatic Intolerance (OI) in ME/CFS, Long-COVID & EDS

My browser has about 40 open tabs right now (!), and many of them are recent news or research on ME/CFS, long-COVID, and related conditions that I want to share with you. If only there were more hours in a day (or I didn't have to waste two of them napping every day)! So, here, I've compiled some fascinating recent (in the past few years) research into Orthostatic Intolerance in these conditions.

Orthostatic Intolerance or OI is an integral part of ME/CFS--over 97% of ME/CFS patients have some form of OI (and many of those with long-COVID, EDS, fibro, MS, and Lyme, too). So, if you have ME/CFS, then you do have OI, too, though you may not be aware of it. OI is an umbrella term encompassing several conditions where the body cannot maintain a steady blood pressure and/or heart rate when upright (standing or even sitting up). The two most common types of OI in ME/CFS are NMH, where the BP drops when you are upright, and POTS, where the HR goes up when you are upright. Rarer forms of OI--like where the BP rises when upright or BP and HR jump all over the place--also exist. The good news is that OI is fairly easy to treat & often brings dramatic improvement! It's what got my two sons back to school full-time when they were young and what allows my son and I to live fairly active lives now (he starts a full-time job next month!).

This detailed blog post about OI includes more information on OI, including all the basics of diagnosis and treatment, plus our own successful experiences treating it. In addition, I wrote a 2-part article for the ProHealth website on OI that is perfect for sharing with doctors because it is short and to the point and includes scientific references at the end, in case your doctor wants to look into it further. Part 1 is Diagnosing OI in ME/CFS and Part 2 is Treating OI in ME/CFS (both are relevant to all conditions mentioned above that include OI). 

 

With that basic information in mind, here are some fascinating studies that bring further light to the severe impact that OI can have on us patients. Many of these studies deal with finding impaired blood flow to the brain, causing severe symptoms, during even mild orthostatic (upright) challenges in ME/CFS patients. Note that any research on OI in ME/CFS will generally also be applicable to those with long-COVID, Ehlers-Danlos Syndrome (EDS), and often fibro and Lyme also.

• An interview with Dr. Peter Rowe, MD, Johns Hopkins (renowned OI in ME/CFS expert) about OI, brain blood flow, and venous congestion in ME/CFS. In this video, he discusses some of the studies listed below.
• From 3 months ago, a video presentation from Dr. Rowe on Updates on Orthostatic Intolerance in EDS. 
• Study (2023): Worsening Symptoms is Associated with Larger Cerebral Blood Flow Abnormalities During Tilt Table Testing in ME/CFS. This clearly shows that OI = less blood flow to the brain = worse symptoms, showing what a serious impact OI has on ME/CFS patients.
• Study (2020): Cerebral Blood Flow is Reduced in Severe ME/CFS Patients During Mild Orthostatic Stress Testing. Typical tilt table testing involves starting from a horizontal position and continuing until the patient is at a 70% standing position for at least 30 minutes. Many more severe patients can't tolerate that kind of test, and even moderate patients will crash badly after it. This study clearly showed that in a group of severe ME/CFS patients, a short test of only 20 minutes, going up to only a 20% position (the equivalent of sitting up in bed), provoked the same reduction in blood flow to the brain.
• Study (2020). Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe ME/CFS Patients. In a study of 100 severe ME/CFS patients (37 of whom also had fibro), there was a 24.5% reduction in cerebral blood flow just from sitting for an hour, even when heart rate and blood pressure didn't show significant changes. This shows that merely sitting can provoke a severe reaction and symptoms and that OI could potentially be diagnosed from a sitting test in severe patients who can't tolerate a standing test or full tilt table test. It also shows that severe effects are caused from being upright (OI), even if BP and HR don't show it.
  
• Paper in Science (2021). Cerebral Blood Flow Remains Reduced After Tilt Table Testing in ME/CFS Patients. This showed that the effects of being upright remain even after the patient is sitting or lying down--something that every patient who crashes after having to stand for a period of time knows all too well!

I find all of these studies absolutely fascinating because:

• OI can be difficult to diagnose, as I described in Challenges in Diagnosing OI, so measuring cerebral blood flow (blood flow to the brain) provides an alternative testing method that may be more accurate.
• These tests--showing reduced blood flow to the brain--show very clearly the severe impact that OI (and being upright) can have on ME/CFS patients, in obvious, quantifiable terms that doctors can understand.
• These studies show how even minimal orthostatic stress--sitting or even lying down at a 20-degree upright angle--can provoke severe symptoms that linger. This is something patients know instinctively, but it's nice to have proof to show doctors!

Again, the good news is that Orthostatic Intolerance is very treatable, and treating OI effectively can provide significant improvement in all symptoms! Finding exactly the right combination of OI treatments for each person can be tricky. It requires patience and persistence! For instance, there are almost 40 different beta blockers alone, plus many other treatment options, and they all work differently for each person. But it is well worth the effort to keep trying until you find what works for you, as my son and I have.

Have you tried treatments for OI yet? What has worked for you?

Please leave a comment below.

You can also connect with me on Facebook and Twitter and now on Instagram, too!

30 Great Book Recommendations for Spoonies

I thought many of you would enjoy a books video I made this week, featuring 30 different books--all of which I've enjoyed--that were either written by a disabled author or feature a character with some sort of illness or disability. There is something here for everyone! The books I included cross all types and genres, fiction and nonfiction. There are even quite a few books by or about ME/CFS (including great, fun novels!). If you struggle to read these days because of your illness, I listened to many of these on audio, and there are lots of middle-grade and YA novels included here, too, which are often easier to read but are just as well-written as adult novels. 

You can watch the video on YouTube or I will include it here:

 

This week was absolutely crazy for me. I usually try to keep my schedule light, alternating days with something out of the house with quiet recovery days at home. This week, I had something (mostly social engagements, which are tiring!) every single day, and two things on Tuesday. I took my elderly book buddy out for lunch, had a game night with friends (out in the evening!), went to a friend's mom's memorial service (during naptime!), attended my book group, and had massage therapy today. Whew. By now, on Friday evening, I'm pretty tired, but ... still not a single crash in 2024! That's mostly thanks to treating thyroid dysfunction (very common in ME/CFS) last year and switching to a very strict diet that finally got my chronic yeast overgrowth (also common in ME/CFS!) under control. I'm very grateful for all I am able to do now, though I'm ready for a quiet holiday weekend at home.

How was YOUR week?

 

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter and now on Instagram, too!

Movie Monday: The Holdovers

There are a few Best Picture Oscar nominees that I've had my eye on, waiting for them to be available on the streaming services we have, and this weekend, I noticed that The Holdovers was available on Amazon Prime. It was just as good as I'd heard, funny and warm.

Paul Hunham, played by Paul Giamatti, is a grumpy, strict ancient civilizations teacher at a private boys' boarding school in 1970 Massachusetts. This Christmas, he's drawn the short straw and is assigned to remain at the school with the "holdovers," those students who must stay on campus for the holiday break. He had no plans to go anywhere anyway; he rarely leaves campus. Initially, five boys are left in his care, three teens and two younger boys, but eventually, there's just one boy left with nowhere to go for the holidays. Angus Tully, played by Dominic Sessa, is an older teen boy who'd been bragging to his classmates that he was traveling to St. Kitt's for the holiday. At the last minute, his mother calls and says it would be best if it were just her and her new husband on this trip, and Angus is left in the empty school with Mr. Hunham. The two actually have some things in common, as Angus is also prickly and unpopular with his peers, though Mr. Hunham thinks Angus is just another spoiled rich kid. Rounding out the sparse holiday crew at school is Mary, played by Da'Vine Joy Randolph, who cooks at the school and is deeply grieving the loss of her son, a past student who died in the Vietnam War. They're a glum, depressing trio, feeding off each other's misery, until they begin to get to know each other better. Secrets are revealed, their broken, frozen hearts begin to thaw, and their holiday turns around. 

We really enjoyed this movie. It's wonderfully written, and the central actors are all outstanding in their roles. It's very funny in spite of some serious topics, like loss and grief, underlying the plot. Surprising twists that we didn't expect keep the narrative moving. And this movie has so much heart! The emotions feel very real and authentic. It's really a beautiful story of people opening up and finding connections they sorely needed. We both enjoyed it very much. 

The Holdovers is currently available on Amazon Prime or for a fee on several other services.

Chronic Illness Vlog: Bump in the Road But Still Doing Well!

Life has been hectic lately, but I did manage to record a vlog last week. My chronic illness vlogs are a little peek into my life with ME/CFS, an honest view of what my life with chronic illness is like on a typical week (though it hasn't been typical lately, with all the travel!). As you'll see in the vlog, I am still crash-free in 2024 (yay!), but I had a string of days last week when I was feeling run-down and had very low energy. I figured it out (yeast again - duh), and getting stricter on my diet helped me get back on track.

You can watch the video on YouTube (the link to YouTube also includes all of my notes below the video, with links to other information you might find helpful that I referenced) or I will include it here below:

 

 As always, I've also incorporated some nature videos into the vlog for your peace and enjoyment.

Our son (the one with ME/CFS for 20 years) and his girlfriend have been here all week and are currently packing their rental truck. They leave early tomorrow morning on a month-long road trip across the US! They've been planning this for years, and we're so excited for them. We'll be guinea pig sitting while they're gone, and then they both start new jobs when they return in June--exciting times!

How was YOUR week?

 

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Recent Webinar: Comparing Immunological Signatures Between Long-COVID and ME/CFS

Earlier this week, I participated in a webinar hosted by the Solve ME organization (which, by the way, has loads of great resources for patients and for doctors, in addition to leading advocacy work and funding research). It was called Comparing Immunological Signatures Between Long-COVID and ME/CFS, which was of great interest to me since earlier research has indicated that immune dysfunction is at the heart of ME/CFS, and my own experiences have certainly borne that out.

You can check out the schedule of additional upcoming webinars here. On their YouTube page, there is a full playlist of all of their past webinars (see the playlist in the right sidebar). And on that page, you can watch the one I just watched, or I'll include it here:

It's an interesting talk, and they've already had some fascinating findings from the first phase of the study, looking at long-COVID patients. Much of it will be familiar to those with ME/CFS, as many of these are well-understood characteristics of our disease.

You'll hear toward the end the question that I asked, though unfortunately, the researcher didn't really understand what I was trying to get across (my fault - hard to explain through a typed comment). I do plan to follow-up with an e-mail to make sure they understand that earlier research showed a change in immunological signature between patients with ME/CFS less than three years and those sick more than three years, so this could confound their data in trying to compare long-COVID patients (by definition mostly less than three years) and pre-2020 ME/CFS patients.

They are still recruiting healthy controls and those with ME/CFS (pre-2020), so I'm sending my info to them to volunteer. Unfortunately, you have to be able to go in-person to the clinic in NYC (though if you live in the NYC area, within 50 miles of the clinic, they can provide a home visit instead).

Finally, a quick apology for not posting much here on the blog lately! I traveled a lot in April and have been pretty run-down the past two weeks. I still haven't had a full "can't get off the couch" crash since the start of the year 😀 but my energy was so low recently that I had trouble writing much. AND, we leave again tomorrow morning for my mom's for Mother's Day and her birthday. Next week, our son and his girlfriend will be staying with us and THEN, life should slow down for us for a while, and I can get back to more regular blogging.

TV Tuesday: The Tourist

While we're mostly watching TV shows on cable right now, we do have a few streaming shows in the mix, and one of our favorites is The Tourist, a twisty, action-packed thriller about a man with amnesia.

As the first episode opens, a man, played by Jamie Dornan, is driving through a desolate stretch of Australian desert, listening to the radio, when a tractor-trailer truck comes out of nowhere and hits him violently. He wakes up in the hospital with no memory of ... well, anything. A police officer named Helen Chambers, played by Danielle McDonald, comes to his hospital room to question him about the accident, but he doesn't remember his name, what happened hours ago, or anything at all about his life before he woke up in the hospital. His only clue is a paper he finds in his pocket, as he's leaving, with a date and time and the name of a diner written on it. He goes to the diner for the meeting, but nothing jogs his memory, and he doesn't recognize the woman who is there, though he learns that his name is Elliot. And then ... bad things happen! It's clear that someone--or maybe more than one person--is trying to kill him, but he doesn't know why. Elliot must try to protect himself while striving to learn who he is, though maybe he doesn't really want to know about his life before this. Helen is kind and is intrigued by this mystery man and wants to help him. And she has her own problems, with a controlling husband-to-be.

I know that's a pretty non-specific description, but I don't want to spoil anything. In this show, the unexpected twists and surprises come fast and furious right from the first episode, making it both suspenseful and engrossing. The viewer doesn't know any more than Elliot does. It's non-stop action--and quite a bit of violence--but the show is also funny, warm, and sometimes sweet. Helen is not an experienced police officer nor a detective, but she wants to help. You'll be rooting for Elliot and Helen, as they try to stay safe from killers and learn more about who he is. We are now watching season 2, which takes place in Ireland, and the secrets and surprises keep coming!

The Tourist has two seasons, with six episodes each, and is currently airing on Netflix.

Just for Fun: A Bit of Nostalgia!

My latest video has absolutely nothing to do with chronic illness (which is nice, for a change!).

If you grew up in the 60's, 70's, or 80's, you'll love this nostalgia-filled walk down memory lane, including books, movies, music, cartoons, and more! I answer some questions for the Old School Tag, created by another YouTuber, and I had so much fun with it--plus a bit of show & tell!

You can watch the video on YouTube or I'll also include it here:

I had a blast making this video - I hope you enjoy watching it!

Tell me about YOUR favorite things from childhood!

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Movie Monday: Dune and Dune, Part 2

My husband's all-time favorite book is Dune by Frank Herbert (the best-selling science fiction novel ever and winner of the first Nebula award in 1966). He's read it several times, he's read many of its sequels, and he's seen the 1984 movie adaptation. He was so excited when the recent Dune movie adaptation was released in 2021 and really wanted to see it on the big screen, but we missed it (I'm immune compromised, and theaters were still off-limits). He watched it by himself on TV when it hit streaming. When we heard that Dune: Part 2 was coming out this year, I told him I would watch the first movie with him at home, so we could see the sequel in the theater (I wear a mask). That's just what we did recently! We both enjoyed this fast-paced, epic sci fi adventure.

This is a complicated science fiction universe, so bear with me here--my husband will help me with a simple description (and of course, I will avoid all spoilers)! Arrakis is a desert planet, set tens of thousands of years in the future. It is the native home of the Fremen, people who live in harmony with the environment. But the huge sand dunes contain a powerful drug, melange, which is known as spice. Spice has many uses, including allowing people to travel faster than the speed of light, so everyone wants to control Arrakis and the spice mining and trade. The Emperor has given Arrakis to the House of Atreides to run, though the evil House of Harkonnen wants to control it. Duke Leto, played by Oscar Isaac, and Lady Jessica, played by Rebecca Ferguson, are the heads of House of Atreides, and their son, Paul (played by Timothee Chalamet), is set to inherit it. Lady Jessica is a Bene Gesserit, part of a matriarchal organization whose members possess almost superhuman mental, physical, and sensory powers. The Reverend Mother, played by Charlotte Rampling, comes to test Paul and discovers that his powers are quite strong (due to a combination of genetics and training). Paul has visions of a frightening future, but he doesn't understand them. Paul sees a young Fremen woman named Chani, played by Zendaya, in his visions, and he meets her toward the end of the first movie. The sequel picks up right where the first movie ended (no spoilers), and much of it takes place among the Fremen, where Paul and his mother are hiding.

OK, that was tough, but I think I managed to describe it in simple terms (my husband and Wikipedia both gave me way too much information! ha ha) and without any spoilers. So, clearly, my husband is  superfan and knows all about this universe, and I was coming into it 100% cold. I was very glad we watched the sequel just a few weeks after seeing the first movie. And we both enjoyed it! It's a complex world, yes, but the movie leaves out some of the background detail of the books. I was able to follow the plot and characters without a problem. It's basically a story about the battle for the planet Arrakis between warring Houses, so there are similarities to stories like Game of Thrones (though that is fantasy and this is science fiction) or Star Wars. But I wouldn't call it a war movie. Like those other TV/movie worlds, it is complex story-telling, filled with in-depth characters you get to know, with drama, love, and hate between them. It is also thought-provoking, as it deals with environmental issues and native people's lands being invaded by outsiders. And it's all set against this fascinating, unique world. The cinematography is amazing, and it's definitely one to see on a big screen if you can. Oh, and it has huge, monstrous sandworms! The acting and writing are excellent, and the human dramas have as much impact as the battle scenes. As a superfan, my husband loved it, which I think is high praise, as we all know that some adaptations of our favorite books don't turn out so well. And I thoroughly enjoyed it, as well. From the way Part 2 ended, it is clear there will be another sequel, and we'll be watching it from our recliner seats in the theater!

Dune is available on Hulu, YouTube, and Max, with a subscription, and for $3.99 on many other services, including Amazon Prime.

Dune: Part 2 is still available in some theaters (recliner seats have been game-changers for me!) and for $24.99 on several streaming services, including Amazon Prime.

See where it's playing near you:

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

 

Spring Camping Vacation Vlog

The blog has been quiet because we were on vacation last week! I not only had no internet; we didn't even have cell service much of the time! We were truly off-the-grid, and it was very relaxing. I put together a travel vlog, loaded with videos and photos of camping, hiking, kayaking, reading, and lots of relaxing! Plus lots of great footage of peaceful nature scenes, to help YOU enjoy the restorative effects of nature, too.

We drove with our pop-up camper down to Virginia (about a day's drive south, so perfect for April) and visited two beautiful state parks there: Holliday lake State Park and Fairy Stone State Park. On our way back, we spent the weekend on Smith Mountain Lake with my college suitemate and her husband (also a college friend) and really enjoyed both the gorgeous setting and the company. Nothing like old friends!

You can watch the vlog on YouTube or I''l insert it below - be sure to turn up your volume to enjoy the sounds of birdsong, bubbling streams, and trees swaying in the wind:

As you can see, I am still feeling really great! As long as I get my 9 hours of sleep a night and my afternoon nap, I can be quite active during the day (9000 steps one day on this trip - a new personal record!). And I have still not crashed even once since the beginning of the year. For details on why,  check out my 2023 Year in Review post (scroll down to "What Helped").

Vacationing this way--in our little camper, our home away from home, on our own schedule--allows me to relax and enjoy a getaway.

Are you able to travel at all or enjoy a vacation?

What helps you?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog 4-1-24: Out in the World, Home Improvements & Easter

I recorded a chronic illness vlog last week, full of videos (and some photos) that show an honest view of my life with ME/CFS and Lyme. And these days, it's a pretty good life!

I am still doing really well and have been quite active, as you can see in the video. I've been able to see friends, go shopping (!), run errands, and even begin to work on our house a little (baby steps!). Small steps toward decluttering feel so good after feeling so helpless the past few years; it feels great to be productive again. Last week, I also went to the movies with my husband and enjoyed a weekend trip to visit family for Easter. This visit was a far cry from our last trip, for Thanksgiving in November, when I was so horribly sick that I needed a second nap between dinner and dessert.

As I've mentioned here before, my recent big improvements came from treating chronic yeast overgrowth (which makes me feel awful). I thought it was already well-controlled ... but I was wrong! It took all of the treatments in my Treating Yeast Overgrowth post, plus a major change to my diet at the beginning of the year. The other factor was effectively treating thyroid dysfunction (hypothyroidism, in my case). My doctor and I worked on that for over a year, but I couldn't see the full improvement with the yeast overgrowth making everything worse. 

That's the way it is with these complex immune disorders; sometimes you can't see the benefits of one treatment until you tackle another aspect of the disease. I have not experienced a single crash from over-exertion (or for any reason) yet in 2024, which feels like a miracle. I'm feeling the best I have in several years. Keep in mind that prior to this, I also treated many other aspects of the disease (see Effective Treatments, newly updated). It's like playing whack-a-mole!

You can watch last week's vlog on Youtube or right here, below:

How was YOUR week?

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

TV Tuesday: Tracker

Several of our favorite shows have returned for new seasons (including Will Trent, The Rookie, and So Help Me, Todd! - my reviews & trailers at the links). But there is one new show that began in February that we're really enjoying: Tracker.

Colter Shaw, played by Justin Hartley (who played Kevin on This Is Us), is a loner who travels all over the U.S. in his pick-up truck and classic Airstream trailer (a set-up my husband drools over in every episode!). Colter calls himself a "rewardist"--he earns a living by finding missing people when a reward is offered. Teddi, played by Robin Weigart, and Velma, played by Abby McEnany, coordinate his schedule and business and help him from afar. His buddy, Bobby (played by Eric Graise), is a disabled vet in Chicago who helps out with some mad hacking skills. And he gets an occasional assist from Reenie, played by Fiona Rene, a talented lawyer with whom he definitely has a history. Mostly, though, it's just Colter out on his own, tracking missing persons in locations all over the country, and avoiding getting too close to even his closest friends, like Bobby and Reenie. In the first episode, we learn that he had a difficult upbringing, with a survivalist father who had the family living in a remote area in the woods. That's where he learned his excellent tracking skills, though his childhood also left him with some emotional scars.

Each episode takes place in (and is named for) a different place and focuses on a new case, and in each one, as Colter is searching for the missing person, we learn a little bit more about him. For those who enjoy travel and the outdoors (that's us!), there is plenty of beautiful nature footage in widely varied places. Hartley is excellent in the lead role, and we're enjoying all of his co-stars, too. And talk about writing credentials! The show is based on a novel, The Never Game, by thriller all-star Jeffrey Deaver and was created and adapted for television by Ben H. Winters, another of our favorite authors (see my review of his The Last Policeman mystery-apocalyptic trilogy). The mysteries and suspense here are great, and it also has character depth and emotional complexity. We're loving it so far and can't wait to see where Colter goes next!

Tracker is currently airing on CBS on Sunday evenings, with seven episodes so far, so it is available On Demand and on Paramount+ (CBS' streaming service). It's also available on Pluto TV, Hulu, and for a fee on major Pay-On-Demand sites including Amazon Prime (starting at $1.99 per episode or $19.99 for the first season).

Movie Monday: American Fiction

Looking for a movie to watch Saturday night, I went through the list of Oscar Best Picture nominees, and we chose American Fiction. I'd heard great things about it, and my husband trusted me (well, that, and the 93% on Rotten Tomatoes and 96% audience score!). We both enjoyed this warm, thoughtful, entertaining movie about books, writing, and the publishing industry.

Thelonius "Monk" Ellison (yeah, it's a mouthful--that's why he goes by Monk), played by Jeffrey Wright, teaches disinterested college students about literature and writing and has published several literary fiction novels. He's a smart, well-educated man and his books have been critically acclaimed, but they don't sell well. When Monk participates in a literary festival, his session is poorly attended, so he goes down the hall to see where everyone is. A packed room is listening raptly to a well-spoken Black female author, played by Issa Rae. Her widely popular novel, We's Lives in the Ghetto, of which she reads an excerpt, represents everything Monk feels is wrong with the publishing industry. It relies on Black stereotypes: rapping, trash-talking Black characters dealing with teen pregnancy, jail, and deadbeat dads. Monk is disgusted, but when he's got writer's block while working on his latest novel, he writes his own "real Black experience" novel as a joke. His editor is shocked when he sends it out, and Monk is offered the highest advance he's ever gotten (by a long shot) from a major publisher. As disgusted as Monk is with the whole thing, he desperately needs money. His sister, played by Tracee Ellis Ross, and brother, played by Sterling K. Brown, are both broke after painful divorces, and his mother has dementia and clearly needs 24-hour care. Needing to care for her, he publishes the book under a pseudonym, and the movie rights are quickly sold for an astronomical sum. Struggling with family issues and wanting to get closer to a woman he's been dating named Coraline, played by Erika Alexander, Monk is conflicted but goes forward. As you might expect, things get really complicated (and hilarious).

This is a very funny movie, but it's smart humor with a hefty dose of irony that the audience is in on. It's also poignant and heartwarming. While it is clearly skewering the publishing industry (and some readers), it's also a deeply-felt, moving story about family. And of course, it is a thoughtful, original approach to thinking about race and biases in our society. It won the Oscar for Best Adapted Screenplay (it's based on the novel Erasure by Percival Everett), and it's clear why: the writing is outstanding. That, combined with excellent performances by its A-list stars, makes this movie an absolute winner. My husband and I both loved it and laughed all the way through.

It is streaming on MGM (I didn't even know they had a streaming service). It is also available to rent for $3.99 on Amazon and on other outlets, like YouTube, Apple, and Roku.

I'm including a "clean" trailer below, which showcases the humor of the movie, but the trailer with the swearing in it is even more funny and highlights the roles of Ross (as his sister) and Brown (as his brother).

New ME/CFS Research Finding: Protein Disrupts Cells' Energy in Mitochondria

In a series of surprising twists worthy of a thriller and a bit of serendipity, researchers from the NIH's Heart, Lung, and Blood Institute (NHLBI) were studying genetic mutations in a family with cancer and ended up making an important discovery in ME/CFS research. It's a fascinating story, with excellent repercussions for ME/CFS patients, possibly leading to clinical trials in the near future!

One member of the family being studied, a 38-year-old woman, had a genetic mutation associated with the cancer that ran in her family. However, this woman (and none of her family members) had experienced worsening fatigue since she got mono (aka glandular fever) at the age of 16, including an inability to exercise. Sound familiar? As often happens, she'd never been diagnosed with ME/CFS, but clearly, she had all the hallmarks of our disease.

Rough outline of what these researchers discovered:

• Looking for genetic mutations responsible for cancer, they found a mutation in gene TP53. It was causing very high levels of a protein called WASF3 in the woman's samples but not in her siblings.
• The researchers did a literature search of WASF3, and guess what popped up? A little-known ME/CFS study, part of an effort by top ME/CFS researcher Suzanne Vernon, from 2011. She and her team had identified 227 patients with ME/CFS who were thoroughly examined and tested by top ME/CFS experts, creating an enormous set of data (which makes me wonder why the NIH ignored this fabulous set of samples and data when they recently published their "breakthrough" study of a measly 17 patients). The team published a paper that identified eleven different genes that were different in ME/CFS patients versus controls and specifically mentioned WASF3 as possibly being involved in the mechanism of fatigue and exercise intolerance.
• Finding that obscure paper, the NHLBI researchers kept digging and assessed other markers in the woman they were studying, compared to that 2011 ME/CFS paper.
• They also kept digging into the role of WASF3 and the effects when levels are high, as they were in both this woman and the ME/CFS patients studied.
• The researchers found that her muscle tissues had a lower oxygen consumption rate and reduced energy production.
• Next, they used RNA to reduce WASF3 levels in both her cells and healthy controls, and they saw mitochondrial (the energy engines in our cells) function improve across the board.
• Then the researchers produced mice with high WASF3 levels, and guess what? Their exercise capacity and ability to recover was significantly decreased (again, sound familiar?).
• They discovered that high WASF3 levels also causes high Endoplasmic Reticulum (ER) Stress Response. I know that's a mouthful, so let's just call it ER stress, as they do. This is important because high ER stress also occurs in other diseases.

The bottom line:  

These researchers studying cancer have found a new mitochrondrial abnormality that helps to explain not only fatigue in ME/CFS but also our characteristic exercise intolerance/post-exertional malaise. Even better: ER stress is a factor in other diseases, so there are already studies to look at supplements and medications to reduce it. This research team now wants to follow-up with possible clinical trials to try some of these treatments for ME/CFS specifically. And, of course, there's the fact that a whole new team of researchers are now fascinated by the complexities of ME/CFS and motivated to keep digging.

Here is the paper published last year by this team on WASF3 and ME/CFS. And, again, the 2011 paper on 11 genetic abnormalities in ME/CFS that helped them to connect the dots. 

To understand all of this, I read an excellent, easy-to-understand article in Science about the new study. And, as always, I relied heavily on Cort Johnson of Health Rising who worked his usual magic to make this complex series of events and scientific studies understandable. You can read Cort's article here (his sidebar, The Gist, is always helpful for a summary).

Exciting news! 

The fact that the research team is already planning clinical studies gives me hope.

What are your thoughts on these new study findings?

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Treating Endocrine (Hormone) Dysfunction in ME/CFS and Long-COVID

I just updated my summary of ME/CFS Treatments (always available through the tab at the top of the page on my blog). It provides a good roadmap for patients and doctors to all of the many effective treatments that are available now for ME/CFS and long-COVID. Many of those treatments are inexpensive and readily available everywhere. I had to add a whole new section on treating endocrine dysfunction because it's something I hadn't covered completely on my blog in the past. I decided to reprint it here, as a new blog post, to be sure everyone sees it.

ME/CFS causes severe endocrine dysfunction--that's the part of the body that controls hormones, and hormones control everything. Messed-up hormones are behind sleep dysfunction (which can be corrected) and are one factor behind Orthostatic Intolerance, too. Since deep, good quality sleep is essential to the endocrine system, correcting sleep dysfunction should be your first step. As my doctor told me 21 years ago, getting good sleep will improve everything (she was right). 

(Note that an endocrine specialist is usually only focused on diagnosing and treating primary endocrine disease, like Graves' disease, Hashimoto's, and others. It may be helpful to see one to rule these kinds of things out, but for most patients with ME/CFS, your primary care doctor or GP can help you with the areas outlined below.)

Here are some other areas of endocrine dysfunction:

Sex Hormones:

Sex hormones can wreak havoc in ME/CFS, too. When I was younger, I got much, much worse whenever I had my period. My doctor switched me to 90-day low-dose birth control pills, which worked great! They keep my hormone levels steady for 3 months at a time. Then, every 12-14 weeks, I stopped taking them for 5 days, got a period, and then went back on them. So, instead of crashing from my period every 4 weeks (25% of my life!), it was just 5 days out of every 3 months or so or 4 times a year. Much better!

In 2022, my OB/GYN told me she was retiring. Since I was 57, she said I had to be fully in menopause by then (our plan was to keep me on the birth control pills until I was past menopause, to prevent worsening from menopause symptoms). She wanted to see me through the transition before she left (yes, she was wonderful). We both knew it would be rough--after decades of holding my hormone levels perfectly steady--but it was much worse than we'd expected! That sudden shift in hormones left me completely wiped out, all my ME/CFS symptoms worse, and mostly bedridden/couchbound. I waited six weeks for the artificial hormones to clear out of my system, got tested, and I was indeed fully past menopause. Then, she started me on Estradiol patches (estrogen replacement, also known as Hormone Replacement Therapy or HRT), along with progesterone pills. As my hormone levels evened out again, I returned to my previous (pretty good) level of functioning. My new OB/GYN has agreed this is a long-term treatment for me because of my ME/CFS (there are risks, though, so it should be discussed with your doctor. Mine ordered tests first).

Testosterone cream can also be helpful to some, especially men with low testosterone.

Thyroid:

For many, many years, I said that thyroid dysfunction was very common in ME/CFS but that I didn't have it. Boy, was I wrong! After that awful transition off birth control pills at the end of 2022, my thyroid was severely dysfunctional. Hormones are all connected (the endocrine system), so when one is off, it can throw the whole system off. This is another reason why it is so critical to correct sleep dysfunction. 

I was already on a low dose of one medication for hypothyroidism, but it clearly wasn't enough. I spent a full year, working with my primary care physician to normalize my thyroid function--getting lab tests (which ones is critical), adjusting medications, waiting two months to retest, etc. Finally, by the end of 2023, with medications and supplements, my thyroid was functioning well. I'm now feeling the best I have felt in years! 

And, by the way, I lost over 20 pounds just from normalizing my thyroid function (no change in diet at that time), and I am at a healthy weight I haven't seen in 20 years. That tells me that my thyroid was off for a long time. This post explains all about Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID, including which tests to ask for.

Low Cortisol:

Low cortisol all the time is a hallmark of ME/CFS. However, the top ME/CFS experts do NOT usually recommend taking hydrocortisone for low cortisol. The biggest problem is that when you add in artificial cortisone, your body stops producing it on its own. So, you take a patient who is already not making enough cortisol and give them something that makes the situation even worse over the long-term. It is likely to help in the short-term but should not be continued for more than a month or so. 

A better approach is one that has worked well for me. The endocrine system dysfunction that causes low cortisol is closely tied to all the other dysfunctional systems in ME/CFS; it's all interrelated, especially in the endocrine system. So, when you treat and correct other problems, the endocrine system just naturally self-corrects and normalizes. So, instead of treating low cortisol directly, treat immune dysfunction, correct sleep dysfunction (a huge factor in endocrine problems), treat OI, improve methylation, treat thyroid dysfunction, and treat underlying infections. When you do those things, the endocrine system just naturally begins to normalize. This has worked well for me, and when I had my 24-hour cortisol test, it was perfectly normal! It showed the expected higher cortisol in the morning, slowly decreasing during the day to a low point at night. 

 Do you have any experience in treating these types of endocrine dysfunction or any others?

Let us know what helped (or didn't).

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New ME/CFS Study by NIH - What Does It Mean?

I first heard about the newly published results of the first-ever NIH (National Institutes of Health in the U.S.) study of ME/CFS when a friend of mine forwarded an article from Medscape to me (I have some great friends). My first impression was, "Meh, not much new, and it was a tiny study," so I have been interested to see how much attention it is getting in the mainstream press and what ME/CFS top experts and advocacy groups are saying about it. Here's a brief summary:

Just the Facts

Bottom line of this study:

• It was tiny - just 17 patients with ME/CFS. 17!! Out of the many millions suffering with the disease in the U.S.
• But it was very comprehensive. Patients in the study underwent extensive testing in a variety of ways over the course of months, and analysis of the data was in-depth.
• Much of what they concluded, we already knew: immune dysfunction is at the heart of ME/CFS, evidence of metabolic changes in people with ME/CFS.
• They focused on its effects on the brain (stemming from the immune dysfunction).
• The researchers definitely took the disease seriously, and the study paper--and all the resulting news coverage--reflects that.
• Because of the tiny study size and the reasons why patients were excluded, we have to be careful about drawing sweeping conclusions about everyone with ME/CFS.
  
• There were some very specific new findings (like specific measures of immune dysfunction) that can be further studied.

 

What Mainstream Media Is Saying

The good news is that it is getting a lot of attention in the mainstream media (which ME/CFS research rarely does), thanks in large part to the connection with long-COVID. 

Here's the NIH's press release (short and to the point), describing the results of the study. Clearly, plenty of news outlets picked up the story. And here's the full scientific study report, published in Nature Communications, a prestigious medical journal.

NPR did an excellent, short summary (you can read it at the link or listen to the story at the top of the page). They interviewed one woman who participated in the study, one of the study's authors from NIH, and four of our own experts: Nancy Klimas, Anthony Komaroff, Maureen Hanson, and Lucinda Bateman. They praised the study for its thoroughness, while noting some of its limitations. NPR was thorough as usual, and this quick update should help to educate the general public.

Science always does a great job of summarizing scientific studies for the general population, and their brief article on this study is good. I think they did a great job of summing it up right in the subtitle: Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome: "megaworkup"revealed brain and immune differences in a small patient group. Of course, they lose points for calling it chronic fatigue and a "mysterious syndrome."

It was also covered by the New York Times, Scientific American, and The Guardian. So, ME/CFS got a lot of news coverage from this report. 

What ME/CFS Experts and Advocacy Groups Are Saying

It's been very interesting to read the analyses of the study from various ME/CFS news outlets, advocacy groups, and patient organizations. 

#MEAction has an excellent, easy-to-read summary, with their analysis of the study's shortcomings and conclusions. Among their observations:

• The study size was so small (17) because the NIH excluded anyone with "comorbid conditions." Well, guess what? Most of us (one earlier study said 80% but it is probably higher) could name a whole list of other diagnoses: POTS, MCAS, EDS, NMH, etc. One could argue (as I often do) that certain "comorbid conditions" are actually an integral part of ME/CFS, like dysautonomia/OI.
• The rigorous requirements of the study (overnight hospital stays, exercise testing, etc. automatically excluded those with severe ME/CFS.
• The study only wanted people in the first five years of illness. Since an earlier (excellent) ME/CFS study showed significant differences in immune markers for people sick less than three years and more than three years, this new study is mixing those together and ignoring those sick longer.
  
• The study concluded that 4 of its 17 participants (24%) experienced spontaneous recovery! We all know that's not indicative of the whole population of people with ME/CFS. Earlier studies have put the recovery rate at about 5%. These strange results are probably due to the way they chose and excluded patients and their tiny sample size.
• The study did require post-exertional malaise (PEM), i.e. exertion intolerance.
• Most of the study's findings of immune and metabolic abnormalities have been reported in previous ME/CFS studies.
• The study authors did find some interesting data suggesting "immune checkpoint inhibitors," which can be followed up in future research.

As always, Cort Johnson of Health Rising website provides an excellent, detailed yet easy-to-understand overview of the study and its findings. 

So, bottom line, it's great that ME/CFS got lots of attention in both scientific journals and mainstream media, and its connection to long-COVID was often highlighted. This study was a good start, but a very long overdue one. Its conclusions have limited use and relevance due to the very small patient sample participating and the reasons why patients were excluded. But, the study did have some findings that warrant follow-up. I'm just glad the NIH is finally, after so many decades, taking our disease seriously.

What are your thoughts on this new NIH study?

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Happy 22nd Illiversary to Me!

Twenty-two years ago today, on March 2, 2002, I woke with the worst sore throat of my life, wracked with flu-like aches, and feeling completely exhausted. I figured I had a flu or some other virus, but we all know how that story ends!

You can read a written summary of our years of illness at the Our Story tab (or in Chapter 1 of my book) or the timeline version of our history that I wrote on my 20th illiversary.

On my 16th Illiversary, in 2018, I wrote about how the anniversary date has affected me over the years, at various points in time, including the treatments that helped me to improve.

Most interesting to me now, 22 years into this journey, is that often the date passes without me really noticing! I only remembered this year because someone else was writing about an illness anniversary elsewhere online this week. In those early years, it was devastating to think of how many years I'd been sick, since I'd left my old life behind.

These days, after 22 years, as the title of my book, Finding a New Normal, indicates, this is just normal life now. The date can be more difficult for me when I am badly relapsed (as I was for periods of the past three years), but this year, now that I am feeling better than I have in years, I am grateful that I am able to manage this well. This year, in particular, after those last few very difficult years, I am hugely grateful that I have come back to life in the past two months and am able to see my friends, go out, and be active again.

So, Happy Illiversary to Me!
(I certainly won't be eating any cake on this strict no-sugar diet!)

How many years have you been sick?

How does YOUR illness anniversary affect you?

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