I'm Still Here! COVID on Top of ME/CFS

Ironically, just three days after my last post, 2024 Mid-Year Update: Yeast, Diet, NO Crashes, COVID hit me with full force. For the last 13 days, I've been badly crashed, living life horizontally, though I am slowly improving now. Here's a brief recap to bring you up to date:

How Did I Get It?

Good question! I don't go out a lot, I avoid crowds when I can, and I always wear a mask in public. When I started feeling sick on July 13, my husband had been away for a week. Our son lives with us, but he's not around much! He and I did have breakfast together Saturday, but my symptoms began that evening, so I didn't get exposed through him. With my husband away, I did see a few friends during the week and ran a few errands (wearing my mask). A friend came here Tuesday (specifically to reduce my risk), and I met two friends at a restaurant for dinner Thursday evening. I rarely eat in restaurants because obviously, you have to remove your mask to eat, but we were at a table in a far corner without anyone else nearby, and we went early, while it was still pretty empty. Still, I could have been exposed from our waitress. None of those three friends had any symptoms or got sick. Typical incubation period for COVID is anywhere from 3-8 days, so who knows?

Course of the Illness So Far

It started with a severe sore throat Saturday evening. While sore throats were a typical part of immune activation for me in the early years of ME/CFS, I don't usually get them anymore. The severe sore throat, plus swollen glands, continued for about a week and has gradually cleared up. I was pretty sure right from Sunday that I had COVID because of the severity of the sore throat, I hadn't done anything to overdo (and as I explained in that last post, hadn't crashed from over-exertion in 7 months in spite of being very active), and I just don't catch other viruses (the immune dysfunction typical of ME/CFS makes our immune systems over-react to viruses and allergens). I haven't had a cold in decades. I also read that this very severe sore throat (it hurt even to swallow water) is very common in the recent COVID variant that's on the rise right now.

Besides the sore throat and swollen glands, I felt feverish, though as is typical for me, didn't have much of a measurable fever. My "normal" temperature runs about 97.5 F, and the highest it went (that I measured) was about 100. And of course, I was just completely crashed - absolutely exhausted, zero energy, no stamina, couldn't even sit up for more than a few minutes. I also developed some mild sinus and chest congestion and mild cough. Those symptoms are slowly improving.

I tested negative for COVID on Sunday and Monday before finally testing positive on Tuesday. Did you get that? No positive test until Day 3 of symptoms. Last time my son had it, it was Day 5 before he finally tested positive. It is SO important to keep testing if you or someone near you is sick and has the symptoms of COVID and to isolate from the first symptoms.

Paxlovid

Just on heavy suspicion of COVID, I messaged my primary care doctor Monday morning to ask for Paxlovid, the antiviral combination that works most effectively against COVID. She's known me for 21 years and was the first to accurately diagnose ME/CFS in me, so she gets it. Unfortunately, she is out of the office for a month with a medical situation of her own! Yikes - bad timing! It took me 2 days (even after the positive test) of messages and phone calls with various office staff, trying to explain ME/CFS and how dangerous COVID is for us, before the Nurse Practitioner covering for my doctor finally called in the Paxlovid prescription. I started it on Tuesday. It's a 5-day course of 3 pills taken twice a day, so I finished it Saturday. The only side effect I experienced was a nasty taste in my mouth.

The reason I was so adamant that I start Paxlovid was because COVID is such a strong trigger for ME/CFS, to start it or to worsen it if you already have it. The research so far isn't clear (and of course, isn't focused on those with ME/CFS). This large NIH study on the effects of Paxlovid in preventing long-COVID is very confusing. Their conclusions don't match the details they describe. Right in the abstract, they state that Paxlovid during an acute COVID infection did not reduce the chance of developing long-COVID, but then they say that data showed it did reduce the incidence of cognitive and fatigue symptoms post-COVID (which, of course, is much of what long-COVID and ME/CFS is). 

The first time I had COVID, Paxlovid was not yet widely available, and it took me 6 months to fully recover back to my normal baseline. By taking Paxlovid this time, I am hoping to both reduce the severity of the initial infection and reduce (greatly, I hope) my recovery time. So far, so good. I didn't get the severe chest congestion and cough this time (and I am highly susceptible to bacterial bronchitis, which I want to avoid). Last time, I was severely ill for the first month, and this time, I'm starting to see improvements in the second week. I'm hoping that continues.

What Else Did I Do?

I already take piles of medications and supplements every day, including everything usually recommended to help fight COVID or other viruses. To give myself an extra boost, I increased my dose of nutrients that support the immune system and the herbal antivirals I take every day, and I added in a couple of extra herbal antivirals:

• Doubled vitamin D3 from 5000 IU to 10000 IU daily (5000 IU twice a day)
• Doubled liposomal vitamin C from 1000 mg (1 g) to 2000 mg (2 g) daily (1000 mg twice a day)
• Doubled Zinc Glycinate from 20 mg to 40 mg daily (20 mg twice a day)

Herbal Antivirals:

• Increased olive leaf extract from 750 mg (with 20% oleuropein, the active ingredient) twice a day (1 pill twice a day) to 2250 mg (3 pills) twice a day
• Added L-lysine 1000 mg (2 pills) twice a day
• Added monolaurin 600 mg twice a day
• Adding (next week) inosine 250-500 mg (1/2 pill to 1 pill) a day on weekdays - inosine is an immune modulator that will help to normalize my immune system, and it also has antiviral properties. Dosing is complicated, and I go on and off of it periodically to keep it effective. Details on what it is, how to use it, dosing, and a link to a caplet that can be split in half all at this link.
  

 

Current Status

As of Day 13, I am seeing tiny improvements every day. By Day 11, I tested negative. The sore throat is pretty much gone and most of the hoarseness. Congestion and cough are improving. My energy and stamina are very slowly getting better. I celebrated my 59th birthday Tuesday with my husband and son and was able to sit at the table for dinner (I've been living on the couch!). The past two days, I have begun to walk outside again - very slowly and carefully. Yesterday, I managed two very slow strolls around the cul-de-sac in front of our house. As I often say of everything related to ME/CFS ... baby steps!

We're supposed to be leaving on a two-week vacation this weekend to Michigan's Upper Peninsula. I've been so looking forward to this trip! But, I can see that I'm not up to it. I'll cancel all the campground reservations tomorrow.

When I last had COVID in 2022, I was in much worse shape at this point, almost two weeks in. But I also see from my journal that I was pushing myself to do way too much, even while feeling awful! This time, I have been very, very careful to listen to my body, stay horizontal, and rest as much as I needed. I did not attempt to accomplish anything until the past couple of days. I guess I am trainable!

 

How are you doing?

Have you had COVID? How did it affect you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

 

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.

2024 Mid-Year Update: Yeast, Diet, No Crashes!

 

While I often mention how I'm doing at the start of blog posts on other topics and in my chronic illness vlogs, I thought it was time for a more comprehensive update. Besides, we just passed the halfway point for the year (!!), so the timing is right. The last time I focused on my own health here on the blog was My 2023 Year in Review back in February, so I'm due for an update!

NOTE: My updates below refer to ratings of how I feel. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" Or you can watch my short video, Chronic Illness: Tracking How I Feel, Symptoms, and Treatments. I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. At the end of each month, I tally up the average of how I felt and also the % of time I spent crashed (a 4 or 5 on my scale). I also rate my exertion each day on a 1 to 5 scale.

 

How I Felt the First 6 Months of This Year

Simply put ... great! It felt like a miracle after my very difficult last three months of 2023, but I've been greatly improved since the start of the year (that's not coincidence--see below for what's making a difference). Most amazing of all: 

I have not had a single crash day in 2024 so far!

For comparison, last November I spent 50% of my time severely crashed, mostly couchbound, and unable to do much of anything. My very few worse days in 2024 have been rated 3--feeling a bit run-down but still able to function. And those were few and far between and always related to yeast overgrowth (see below). 

Even more incredible is that I have been very active so far this year--able to take walks most days, get back into a strengthening routine, go on long (for me - over an hour) hikes with my husband, and even go shopping. I danced at a wedding last month! And with all of that activity, I have not even once worsened from exertion intolerance. It's truly stunning to me.

My rating (1 to 5, with 5 being worst) for the past 6 months has been a steady 2.2. I haven't been that good since 2017. Last year, my average was 2.5 and 2.9 in 2022. 

It's all been good news, and it's been such a joy to be living my life again, able to get together with friends, enjoy my family, and get caught up with work and home.

So, that leaves the big question ... WHY?

Enjoying a 90-minute hike two weeks ago!

Factor #1: Normalizing Thyroid Function

I spent all last year working with my primary care doctor to find the best treatments for my hypothyroidism, after we realized that my thyroid labs were about as low as they could get. It required a lot of trial and error--and patience and persistence--to get new labs every two months, adjust the treatments, and wait to see the effects. But it was well worth the effort. By fall of 2023, my numbers were finally in the normal range for both T3 and T4, I had settled into a stable dose of two medications, and my energy had improved. I then added iodine, which is essential to thyroid function, which helped me to further improve. 

Most surprisingly (to me) was that I lost about 20 pounds last year just due to treating thyroid dysfunction. I made no other changes to diet or exercise (I was actually less active for other reasons explained below)--the weight just slid off me, bringing me back to my pre-illness (22 years ago) weight. What's interesting to me is that I had gained that extra weight gradually, a few pounds a year, even though I was eating a restricted, healthy diet and exercising as much as I was able. That tells me that my thyroid had been dysfunctional for many years, and we missed it due to not testing the right things.

I summed up all the lessons I learned in my post, Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID because thyroid dysfunction is extremely common in our diseases, due to endocrine dysfunction. 

 

Factor #2: Yeast Overgrowth and Diet Changes

As I said, by last fall, my thyroid function was almost normal and I had more energy ... but I was still badly crashed and very sick. The reason why was a mystery to me, and I tried everything that had helped in the past to no avail. For the last three months of the year, I had constant flu-like aches, a sign of immune activation and an indication that my ME/CFS was badly flared up. I had more energy, but I felt awful, and if I did anything at all, I got even worse.

Finally, in mid-December, I saw my functional medicine specialist and told her what was going on. I explained that yeast overgrowth was a chronic problem for me (and many others with ME/CFS, due to our immune dysfunction) but that I was already treating it. She asked me to pull my mask down and stick out my tongue and told me I still had visible thrush in my mouth. I was stunned because I take piles of probiotics every day, prescription antifungals daily, and thought I was eating a strict diet. She questioned me a bit about all of that and said that since nothing else was working, I'd need to get extremely strict with my diet--no carbs at all--in order to starve the yeast.

I was desperate, so I did as she said. She recommended a carnivore diet, which is just as it sounds: meat, fish, eggs (a little high-fat dairy is also OK but I'm dairy-intolerant). Within 10 days of changing my diet, those relentless flu-like aches finally disappeared (just in time for Christmas).

I stuck mostly with carnivore, with just a few bites of cruciferous veggies or avocado each day--what I called 97% carnivore. After three months of that, I transitioned to a more keto diet and have kept that up. For me, that means more veggies but still no grains, no sugars at all, and no starchy vegetables. I explain more about my experience with the carnivore diet in this video. Next week, I hope to post a new video, with brief explanations of the diets that are typically best for those with immune disorders like ME/CFS (paleo, keto, carnivore).

Unfortunately, the yeast overgrowth is still very persistent. I am still taking my maximum dose of prescription antifungals, a whole range of probiotics focused on my own gut testing results with the aim of controlling yeast, and herbals antifungals. And I still have to stick to a very strict diet. I was tired Sunday and Monday this week and realized it was again due to yeast overgrowth. I had "cheated" a bit: two cups of popcorn Saturday evening, a quarter-cup of blueberries Sunday. That's all it takes for the yeast to come back and thrive in me. It is barely kept under control with this diet ... but if I stick to it, it is. That's difficult for me, but I realize it is something I can control, and I'm grateful for that.

Since yeast overgrowth (aka candida) is extremely common in ME/CFS and long-COVID and often overlooked, I wrote a blog post about Treating Yeast Overgrowth/Candida that includes lots of different treatments to try (just updated this year).

That's how my year is going so far!

How are you doing this year?

Have you tried treating thyroid dysfunction or yeast overgrowth? 

Have any other treatments helped you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Movie Monday: A Quiet Place: Day One

On the 4th of July, with temperatures in the high 90's here, we escaped to a movie theater to see the third movie in John Krasinski's Quiet Place series, an origin story called A Quiet Place: Day One. First, let's get some misconceptions out of the way. I don't like horror movies. Although these movies are about an invasion of gruesome aliens that hunt by sound, like its predecessors, this movie is a quiet (very quiet!) character study, with plenty of emotional depth, insights about humanity, and heart. And, yes, there are some gross and very dangerous aliens, too. Check out my earlier reviews of A Quiet Place and A Quiet Place Part II (I just reread them both and rewatched their trailers, and I would definitely watch the movies again!). Although John Krasinski helped to write this third movie, he and Emily Blunt and their film family do not appear in it, and he doesn't direct it. It's a new take on the setting and premise of the series.

The movie opens in a quiet nursing home environment, during a group therapy session. Sam, played by Lupita Nyong'o, is younger than many of the other residents and somewhat flip and disdainful of the group session. We soon find out that this is hospice care and Sam and the other residents are dying. While Sam seems brash and uncaring at times, she has a cat named Frodo that she clearly loves and is attached to, and it's obvious that her coolness is merely a shield to protect her. Reuben, played by Alex Wolff, is a nurse at the facility who leads the group session and convinces Sam to come with the group on an outing to see a show in the city by agreeing to her plea for real New York pizza afterward. She figures this will be her last trip to the city. Their bus takes them to the city, but the show has barely started when the alien invasion hits. Everyone runs into the street to see the fireballs fall from the sky and the gruesome aliens emerge. It soon becomes clear that the aliens hunt by sound, and people quickly learn to be quiet in order to avoid them. Announcements tell people to head south to South Street Seaport to board boats, but Sam has her own private mission and moves against the flow of people, heading north and clinging tightly to Frodo. She meets a British man named Eric, played by Joseph Quinn, who is also alone in the city, on a business trip, with no family or friends nearby. The two of them (plus Frodo) struggle to stay safe from the aliens, as Sam single-mindedly pursues her mission.

Michael Sarnoski helped to write and directd the movie and said in an interview that John Krasinski gave him almost total freedom to come up with a unique take on this apocalyptic world. What he came up with is brilliant because Sam has a very unique perspective during this disaster: she knows she is already dying (soon). And the focus here is squarely on the characters, especially Sam and Eric, as they are bonded by their terrifying experiences and confide in each other, as people tend to do in this kind of intense situation. The actors are all excellent, but Lupita Nyong'o's performance is especially good. It is a thriller, yes, with plenty of fast-paced scenes, but it also has a laser-focus on these two people, with plenty of emotional depth and heart. I cried at the end. For scaredy cats like me, while technically alien invasion movies are usually classified as horror, this doesn't feel like a typical horror movie, and my husband and I both noticed that there is no gore and the violence mostly happens off-screen (though those aliens are pretty disgusting up close). It's a unique movie experience, like the first two movies were, though with its own new twist on the theme. We both enjoyed it very much.

A Quiet Place: Day One is currently in theaters, which is the ideal way to see all three movies, if you can. It can also be purchased on YouTube for $25 or pre-ordered on Amazon for the same price. The first two movies are available on Amazon, Paramount+ and other services.

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.

Roadmap to Effective Treatments for ME/CFS and Long-COVID

The problem with a blog is that older posts kind of get buried, and my blog is now over 18 years old! So, I wanted to write a new post that directs you to all of my main treatment posts, since that is the topic that people with ME/CFS and long-COVID are often most interested in. For a more detailed explanation of each of the topics below, check out the Effective Treatments tab at the top of the page. That is also a guideline of all the treatments we have found effective, but I thought it would be helpful to write a current post to bring it to more people's attention.

(NOTE: Everything mentioned in this post is based on research and the practices of the top doctors treating ME/CFS and Long-COVID patients, as well as our own experiences.  You can direct your doctors to the U.S. ME/CFS Clinician Coalition for extensive resources on how to diagnose and treat.)

There is a misconception that there are no effective treatments for ME/CFS, but that is not true--it's just difficult to find a doctor who is knowledgeable about all of them. As with most aspects of this complex immune disorder, patients (or their caregivers) often have to be their own advocates and suggest treatments to their doctors. This post on Finding a Doctor for ME/CFS includes lists of ME/CFS experts all over the world, second-tier doctors who know how to treat some aspects of ME/CFS, and tips on finding a local primary care doctor to help you.

Below, I will just provide a brief outline on the aspects of the disease where treatments can help (based on our experiences) with links to the blog posts with detailed information, including how that aspect affects the disease, why treating it can help, and options for treatment. Each of those posts also includes links to research and more information. Check out the Effective Treatments tab at the top of the page for a more detailed outline.

Here are the treatments that have helped my sons and I to greatly improve our ability to function, our stamina, our exertion tolerance, and ultimately, our quality of life. We now live active, semi-normal lives. My son is now even working full-time!

These are not necessarily in order (though going down the list works). ME/CFS specialists often focus on treating those symptoms or aspects of the illness which are causing the most problems first. Remember: everyone is different!

Roadmap to Effective Treatments:

Correct Sleep Dysfunction. Fixing sleep helps everything! These treatments help to correct the problem at its root cause, not just knock you out with sedatives. Most of the treatments are cheap and readily available and any doctor should be familiar with them.

Treat Orthostatic Intolerance (OI). OI is an integral part of ME/CFS and long-COVID and treating it can often bring dramatic improvements. There are a wide variety of treatments available, many of them familiar to any primary care doctor. This post provides an overview of diagnosing & treating OI, with lots of links to more information.

Treat Methylation. Methylation is almost always dysfunctional in people with ME/CFS and long-COVID and directly affects GI function, energy production, detoxing, and mitochondrial function. This blog post explains what methylation is, with information on how to treat it with simple supplements. If you are one of those who can't tolerate even small doses of medications or supplements, start here. Vitamin B12 is an important part of improving methylation; this post explains the types and formats that are most effective.

Treat Immune System Dysfunction. Since ME/CFS is, at its heart, an immune disorder (as more and more research has proven) and immune system dysfunction is behind many of our symptoms, it makes sense to try to normalize the immune system. Both immune suppressants and immune stimulants can make us worse, so we need immune modulators. Some to try, plus other treatments:

• Low-Dose Naltrexone (LDN)
• Inosine or Imunovir
• Increase Glutathione 
• Treat MCAS (Mast Cell Activation Syndrome) 

Diagnose and Treat Underlying Infections. For many people, this aspect of treatment might need to come first, not last, especially if you have tried some of the above treatments and nothing seems to help you. Because our immune systems are dysfunctional and various infections are usually the triggers that start ME/CFS, almost all of us have some infections present that prevent us from improving.

• Reactivated Viruses. Our immune dysfunction allows old viruses to reactivate, especially herpes-family viruses. In these cases, treating with anti-virals often helps. If you know what infection triggered your ME/CFS to start, like mono/glandular fever, then treating that is often very effective. Dr. Martin Lerner, now deceased, led the way on research into Treating ME/CFS with Anti-Virals.
• COVID. If you have long-COVID or COVID worsened your ME/CFS, then treatment with Paxlovid could help, according to anecdotal reports. Studies are on-going.
• Lyme Disease and Other Tick Infections. Tick infections often go hand-in-hand with ME/CFS (and, indeed, Lyme disease is one of the dozen or so infections identified as a trigger for ME/CFS). This post explains why everyone with ME/CFS or FM should be evaluated for tick infections and includes a link for finding a Lyme expert near you. This is especially important for anyone with join pain and/or nervous system symptoms. The urgency is that tick infections can cause permanent neurological damage if left untreated. If you've had a negative test for Lyme, that doesn't really mean anything--the post explains why.
• Yeast Overgrowth. This is incredibly common in ME/CFS and long-COVID due to our specific kind of immune dysfunction. While not technically an infection, the immune system reacts as if it was. Wide range of treatments (newly updated in 2024) at the link.
• Infection-Triggered Crashes/Relapses. Exposure to even a simple cold can often trigger a severe crash or relapse in ME/CFS or long-COVID, due to our immune dysfunction. This post covers ways to improve the immune system to prevent those crashes and ways to treat when they occur.
  

Diagnose and Treat Endocrine Dysfunction. 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. Both sex hormones and cortisol are covered in that endocrine dysfunction post link.There a more detailed post on Diagnosing and Treating Thyroid Dysfunction, as it's a complicated topic.

Diagnose and Treat Gastrointestinal (Gut) Issues. 70-80% of immune cells in the body live in the GI tract, so it's critical to address GI issues. Plus many people with ME/CFS and long-COVID develop GI problems. This blog post outlines the testing, diagnosis, and treatment of my son's GI problems, which resulted in huge improvements in his overall condition, finally allowing him to work full-time! 

 

There's no miracle cure or single treatment for ME/CFS and long-COVID, but these are the treatments that have most helped us.

What treatments have most helped YOU?

Please leave a comment below.

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

Movie Monday: Hit Man

In our hotel in Virginia this weekend (we were there for a wedding the next day), we only had access to Netflix and aren't currently watching any TV shows on it, so we chose a new movie I'd heard about: Hit Man. This fun, twisty thriller/rom-com turned out to be very entertaining!

Glen Powell stars as Gary Johnson, a classic mild-mannered professor who lives alone with his two cats, Id and Ego. He teaches philosophy at the University of New Orleans. As a hobby, he has a talent for electronics, so he works part-time for the NOPD, helping them with electronic surveillance. Undercover cop Jasper, played by Austin Amelio, pretends to be a hit man, someone tries to hire him, the police get him on audio (and often, video) with Gary's help, and they arrest the person. One day, Jasper gets suspended from the force just before one of these fake hit man appointments is to occur, and Detective Claudette, played by Retta, asks Gary to come out of the surveillance van and instead take Jasper's place and pretend to be the killer-for-hire. It turns out that quiet, introverted Gary does a great job in the role, and he becomes the new fake hit man for future sting operations. Gary, teaching philosophy to uninterested undergrads in his day job, gets really into making up a different persona to fit each new prospective "client," based on what he thinks they'll expect. He uses wigs, facial hair, different clothes, and even fake teeth, and fully inhabits the character he's pretending to be. His arrest rate speaks for itself. Then, a beautiful woman named Madison, played by Adria Arjona, tries to hire him to kill her husband. It's clear he's been controlling and abusive and Madison is scared, so Gary goes off-script. Instead of letting her clearly state that she wants to pay him to kill her husband (thus ensuring a conviction), Gary talks her out of it and convinces her to run away from him instead. His team is not happy with the outcome. When he met Madison, Gary was pretending to be Ron, an ultra-cool, handsome guy. They meet up again and are very attracted to each other. Though Gary knows it's wrong, he really likes Madison, and they begin seeing each other. Besides, he kind of likes being Ron. How can this relationship end well, when it's based on a lie? And how long can Gary keep his colleagues from finding out?

Crazy as it sounds, this movie is based on a real-life man named Gary Johnson who helped Houston police convict many people of hiring a contract killer over more than a decade. Of course, writer and director Richard Linklater (of Boyhood and the Before trilogy) gave the underlying story the Hollywood treatment here, with a lot of laughs, a hot romance, and some unexpected twists that didn't happen in real life. It's an intriguing premise for a movie, and Glen Powell is outstanding in the leading role, somehow easily transforming from nerdy teacher to slick criminal with dozens of different personas. This movie is filled with humor, from Gary's many disguises to his wide range of clients (including a teen boy who wants to pay him in video games--really happened!) to the sting operations. It's also very sexy, with Gary fully coming into his own as Ron, with Madison's help. But there is also plenty of suspense and lots of surprising twists, especially after Gary and Madison get involved and are in danger of being found out. It was highly entertaining, and we thoroughly enjoyed it. Lots of fun!

Hit Man is a Netflix original movie and is currently available there.

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:

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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:

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