My Relapse Is Finally Ending!

I got out on a local walking trail today!

Sorry I've been so absent from the blog; I was pretty wiped out after the holidays. But I have good news! After three months of being badly relapsed with my chronic illness (ME/CFS) and stuck on the couch, I am starting to come back to life. The last two weeks, I had some better days but was very up and down: good day, bad day, good day, bad day, etc. This week, I have finally turned the corner. Today is my fourth good day in a row, so I don't think this is a fluke. I seem to be finally coming back to life.

I left the house three times this week, after months of being stuck on the couch. One of those was a trip to the orthodontist to get Invisiline (at age 59!), but even that was a big thrill. I ran a few small errands in our little town, and it felt so good just to be out in the world again, in my little red car, singing along to the radio, and seeing people besides my husband! And today, I got a long overdue haircut and ran into an old friend I hadn't seen in over 10 years!

For the last two days, after several days with no flu-like aches, I cautiously began walking again: still  tiny walks of about 15 minutes, but I left our little cul-de-sac! Such a thrill 😀 And today, the temperature went above freezing for the first time in over a week, so my timing was great--that sunshine felt so good.

This is the song that's been going through my head today (it's a weird video & some weird lyrics, so I'm not sure what the artist intended, but the chorus has been going through my head and making me smile):

What caused the relapse and why did it end? I have no idea! I wish I had some answers, but this disease defies logic (which makes me crazy--I like logic). The flu-like aches (a sign of immune activation) began on a random day in mid-October. My best guess is that I was possibly exposed to someone's random cold, and it triggered my immune system into overdrive for three months. I wear a mask in public, but sometimes my son or close friends come to visit (I realize I should be wearing a mask then, too) or (rarely) we eat in a restaurant where I have to remove my mask. 

Or perhaps it was simply an increase in allergies triggering my immune system to rev up. My main allergies are to dust and mold, and the timing sort of coincides with spending more time indoors (and molds increase in fall with leaves on the ground), though we had a very warm, dry fall this year. Who knows? I wish I knew what the trigger was so I could prevent it next year because I am really sick of being at my worst during the holiday season.

For a while, I thought it was the same thing that caused a bad relapse at the end of last year: yeast overgrowth, which is chronic for me and many people with ME/CFS or long-COVID, due to the specific kind of immune dysfunction we have. But I got extra-strict with my diet (still doing a keto diet) and switched to a stronger prescription antifungal than I normally take for a month. My dentist even checked me out and said there was absolutely no sign of thrush in my mouth, so I don't think that was the cause this time.

Perhaps my treatments played some role in my improvement. I took two 5-day rounds of steroids in December, in a desperate attempt to calm down my immune system so I would feel better by Christmas. I actually felt awful Christmas Eve and Christmas Day, but I was also doing way too much with lots of people here. But maybe the steroids did eventually help calm down my immune system. I do think the aches were less severe afterwards.

I also played around with my immune treatments, wondering if instead of their typical moderating effect, they might be further over-stimulating my immune system. I went off low-dose naltrexone for the first time in about 16 years. I tried restarting it a couple of times, then gave up and just stayed off it (for now). [Though note that it helped me tremendously for those 16 years, so it is worth trying. Details at the link.] I also stopped my daily glutathione nasal spray for a week or two, but I have restarted it, which coincided with feeling better. It's all such a guessing game because SO many factors can affect how we feel (including random things like the weather).

I'm due for another increase in my thyroid medications (for hypothyroidism) after labwork showed my numbers still well below normal in November, but other than that, I plan to stay the course and not change anything else for now. Don't want to mess with success!

We are starting to plan some big road trips with our camper for 2025, but you know how it is with this crazy disease! Last year, I got COVID in July and had to cancel five campground reservations for a two-week trip we planned. So, we will make reservations and hope for the best.

Now that I'm feeling better, I hope to do a 2024 wrap-up, both here and on YouTube, like I usually do at the start of a new year.

How are you so far in 2025?

What are your hopes and plans for the new year (relative to health or anything else)?

Let me know in the comments below.

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

 

Movie Monday: Next Exit

My husband and I took a break from the hectic holiday season recently with a movie. I chose Next Exit. I'm not sure where I first heard about this movie, but it was on my very long list (an Excel spreadsheet!) of movies I want to watch. The premise sounds a bit dark (and my husband doesn't like dark), but I liked the trailer and read that it had some humor in it. We both enjoyed it very much, though it is hard to categorize, as it includes elements of drama, comedy, and even science fiction.

The movie is set against a science fiction backdrop, but that only comes into the story at the very beginning and the end. A scientist has proven there is an afterlife, and her video of a little boy playing cards with the "ghost" of his dead father brings wide media attention to her work. She's overseeing a large study, where people volunteer to go into the afterlife (i.e. die), and she has developed a way to track them into that world. But this film focuses in on just two people who have signed up for the study: Rose, played by Katie Parker, and Teddy, played by Rahul Kohli. Rose is haunted by a ghostly presence that seems to be her dead father, and she copes by drinking heavily. We're not sure at first why Teddy signed up for the study, except that he seems to be mostly alone in the world, with no family. The two of them are both headed cross-country to California and only have five days to get there. Due to a series of travel mishaps, they end up sharing a rental car. Rose is especially prickly at first and not interested in getting to know Teddy, but the long hours on the road, plus some challenges they encounter together eventually lead to them talking and gradually sharing their stories and connecting, in spite of Rose's reticence. 

If that sounds depressing--two strangers sharing a ride on their way to commit suicide--it's not! In fact, it's a surprisingly uplifting movie. It has a great sense of humor, with plenty of funny moments to add levity to the somber plot. The two lead characters are both excellent, and it's entertaining to watch them slowly engage with each other. As they each gradually reveal information about their history and the reasons why they embarked on this trip, the viewer comes along for the ride (if you'll excuse the metaphor). And, yes, it's a road trip movie, so there is plenty of inherent fun in that trope (though, as a veteran road-tripper, I thought their route made no sense--but it was good for the story). All in all, this isn't a story about death; it's a story about life. It's about hope, meaning, and connections. We both thoroughly enjoyed it.

Next Exit is currently available on Hulu and for a fee on many other streaming platforms.

Chronic Illness Holiday Update

Wow, I knew it had been a while since I had the time or energy to post here, but I see it's been three weeks! Sorry about that. I am still in the throes of a bad relapse of my ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome)--about two and a half months now--and the holiday season has been rough.

I've had terrible flu-like aches every day for about the last 10 weeks, so I know my immune system is in an "activated" or hyper state. But I have no idea what triggered it this time. When the same thing happened at the same time last year, it turned out to be a flare-up of yeast overgrowth (common in ME/CFS; treatments at the link). So, I first tried a stronger prescription antifungal than I normally take for a month. However, I've been sticking to my stricter keto-style diet all year (which has been very effective), and I double-checked with TWO visits to my dentist, who confirmed there was absolutely no sign of thrush or yeast overgrowth. So, my best guess is that this lengthy crash was "just" triggered by exposure to some random virus, like a cold. Though I wear a mask out in the world, my son comes home sometimes, and we occasionally have close friends over and eat together. Who knows.

I also tried two short (5-day) rounds of prednisone (a steroid) to try to calm my immune system down. That did help a little bit (especially the second round)--and I added two more days just to get through Christmas--but I'm still not back to my normal baseline. I still have those flu-like aches every day, though they're not quite as severe as before.

You can hear all the details in my recent Chronic Illness Vlog, recorded two weeks before Christmas during that first round of steroids. It's an honest peek into my daily life for a week: the good, the bad, and the ugly! You can watch the video on my YouTube Channel or I'll include it below.

So, I was in pretty bad shape on Christmas Eve and Christmas Day: off the steroids and had overdone on Sunday, trying to help my husband a bit with cleaning and decorating (I know better but he's been doing everything). That's why I restarted the steroids--just for 2 days--on Christmas. I didn't sleep well Christmas Eve in the early morning (too worried about everything I had to do!), so I was pretty wiped out. I somehow just zombied through my day with a smile (and a mask) on my face. Our son (with a bad cold!) and his girlfriend came to visit, as did my mom and her husband, our usual crowd for Christmas Day. We smartened up this year and ordered the food in--a full turkey dinner that was delicious! It still required some work to get everything warmed up, table set, etc. but everyone helped. 

Christmas dinner

I was quite a bit better yesterday after a much better night's sleep (it sucks how one hour of sleep more or less can mean functioning OK versus feeling horribly sick). So, I managed to enjoy our annual cookie decorating/Grinch party with our oldest and closest friends--a cherished tradition, even though the "kids" are in their 30's now!

The cookies we decorated last night!

And today, everyone had gone back home, my husband and younger son went golfing, and I had a spectacular day in quiet solitude! Still mildly achy and worn out (woke too early again), but with absolutely nothing I had to do. And now it's time to reheat leftovers for dinner!

Tonight I plan to add an extra 1 mg of my extended-release melatonin (from 2 to 3 mg) to my usual regimen of treatments to correct sleep dysfunction (which I am really appreciating!) to hopefully end this too-early waking in the morning.

Tell me how you spent your holidays this year!

How have you been feeling?

Do you get worse in late fall/winter?

How do you accommodate your illness and still enjoy holidays & family?

Let me know in the comments below.

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

Diets Recommended for Chronic Illness: Paleo, Keto, Carnivore

I finally edited and uploaded my video on the three diets most often recommended for ME/CFS, long-COVID, and other immune disorders: paleo, keto, and carnivore diets.

The video describes each of these three different diet options in detail, including what each entails, how they can benefit someone with chronic illness, and lots of ideas on what kinds of foods to eat, with plenty of suggestions for meals, snacks, and recipes. All three of these diets are often recommended for a wide variety of medical conditions, including immune disorders like ME/CFS and long-COVID, autoimmune disease, and any health problem that involves inflammation. They are all low in inflammatory foods, low in foods likely to exacerbate food allergies or intolerances (which are very common in ME/CFS and long-COVID), and good for those with yeast overgrowth (also very common in ME/CFS due to our specific kind of immune dysfunction). Surprisingly, these diets are also very tasty, with a wide variety of flavors, and are easier and less work than a traditional diet.

We have tried all three and have seen benefits in reduced symptoms, increased energy, and better control of yeast overgrowth. We ate paleo for about a decade or so, and I wrote a detailed blog post about the paleo diet, if you prefer to read about it. However, as I explained in the video, I now know it was a mistake to make exceptions to it, so ignore the modifications I talk about in the post! When I have more energy, I'll update that. It worked well for us for a long time and might have continued to work for me, if I'd been stricter with it. At the start of 2024, I ate mostly carnivore for three months, which helped to get my yeast overgrowth under control. And since April, I have been eating more of a keto diet. My husband has also been eating keto, all year. We both lost weight (though that was not my intention), and my cholesterol and triglycerides are the lowest they have ever been, by a lot!

You can watch the video on YouTube or here:

These diets have definitely helped my son and I over the years. In fact, discovering my son was severely gluten-intolerant in 2020 and getting him on a gluten-free diet (which all of these are) was a key to his current excellent condition. Eliminating gluten and following a paleo/keto/carnivore-ish diet (he eats sort of a mash-up of the three these days) helped to not only improve his gastrointestinal symptoms but also significantly improved all of his symptoms. Since June, he has been working a fairly rigorous, physical job in the field he studied full-time! It still feels like a miracle to us, but he says it's the best he's felt in as long as he can remember (he's 30 now and has been sick since age 10).

We are still learning, so I would love to hear about your experiences (or your questions).

Have dietary changes helped you?

 

Have you tried any of these diets?

 

Please share your experiences with diet or your comments and questions.

You can leave a comment below.

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

Giving Tuesday 2024: Help ME/CFS and Long-COVID Patients

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday and Cyber Monday. Every little bit counts, even if it's only $2 or $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did years ago with OMF (see below) so that $5 was automatically donated from me each month, and last year, I increased it to $10 a month. I don't have to think about it or do anything else, and my donation now adds up to $120 a year! It only takes a few minutes to either donate or set up recurring donations. And every little bit counts.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30! All of the groups listed below that do ME/CFS research and/or support ME/CFS patients are now also helping those with long-COVID.

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing great work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingNovemberOMF - Thanks to generous gifts by multiple donors, every donation made in November (through today, December 3) is TRIPLED, up to $1,000,000! It's a great opportunity to make your money go farther! This organization does some outstanding, groundbreaking scientific research into causes, treatments, and cures for ME/CFS and long-COVID, with doctors, scientists, and researchers in Collaborative Centers across the globe. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - Donations made to Solve ME today will be doubled, thanks to donations from their Board of Directors! And today only, on Giving Tuesday, another generous donor has offered to also match donations up to $25,000, so donate today and your money will be tripled! This organization does a lot of work in both ME/CFS and long-COVID research and advocacy. You can read their newsletters here, including research updates and read more about their Solve Long-COVID Initiative here.
  
• Simmaron Research - Donate through their website and you can read all about their research projects here, including the first-ever biomarker-based treatment trial.
  
• #MEAction - This organization is focused on advocacy and outreach rather than on research, and they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, ways that anyone can help and take action, and you can donate to the organization here. They also have information on Long-COVID and ME. 
• American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES) - they focus on meeting the needs of patients and caregivers through support, advocacy, and education. They have an informative newsletter, loads of useful information on their website, and advocacy programs. They also, uniquely, have a Financial Crisis Fund that I recently donated to, to help patients in dire need of food, housing, medical care, or other support. You can donate to AMMES here.
  
• ME Association - This UK organization supports patients and research in both ME/CFS and long-COVID. Here's more about the organization and what they do, plus their current research projects.They also have an online shop featuring all kinds of books, t-shirts, cards, and more, with proceeds supporting the organization. And you can donate here.
  
• Emerge - The primary ME/CFS association in Australia provides research and patient support and advocacy. They are now also helping to support the Australian Collaborative Research Center of Open Medicine Foundation. Donate here.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. I have hosted fundraisers on Facebook for my birthday every year, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, and share your fundraiser with Facebook friends.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop! 

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. You can also earn by using the site to search. And use that iGive link I posted in the previous line, and we'll earn an extra $5 for Solve ME!

To show you how well this works, my iGive page currently shows that I have selected Solve ME as my cause, that I have personally earned and donated $314.10 to them, and that they have earned a total of $6,611.39 from all supporters! Isn't that amazing? Over $6600 just from clicking a button before we shop online. Amazon is not a part of either program and got rid of its own charitable donation program last year, but you can find most other online stores on at least one of these.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients! 

 

Let me know if you know of other organizations or other ways to give that I missed here.

You can leave a comment below.

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

Chronic Illness Vlog: A Week in My Life During a Crash (Plus, Nature!)

I've been stuck in a mysterious relapse of my ME/CFS for the past month. I've had flu-like aches every day. I thought that--like last fall--it was due to yeast overgrowth flaring up again, but stronger antifungals and a stricter diet aren't having the effect I'd hoped. I'm a little better, but still achy. Since that is an immune symptom that is a warning sign for me, I have been lying low, not going out much, no walks, and spending a lot of time on the couch ... and in my reclining chair on my deck.

I made a vlog last week that gives you a peek into my life with chronic illness during a down week (though, admittedly, not as bad as in the past for most days last week). I talk about what treatments have worked in the past and what I am trying now. And I included some nature footage, so you can enjoy the sights and sounds of nature, too. You can watch it on YouTube or here:

And if you enjoy nature--or want to improve your health!--I will also include my recent outdoor vlog from our last camping trip of the season, at Trap Pond State Park in Delaware, with beautiful fall foliage. Enjoy the peaceful, soothing videos and photos on YouTube or here:

Did you know that scientific research shows that just looking at pictures or videos of nature has measurable positive effects on both mental and physical health? It even improves immune function! So, enjoy this brief respite in nature. Then, open your window or go outside, if you can manage it, to experience nature in your own backyard (or porch or patio or balcony). I'm in my reclining chair on the deck as I type this. It always calms me and makes me feel better.

How was YOUR week?

And how do you enjoy nature?

Please let me know in the comments below.

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

Movie Review: My Old Ass

I'd heard about this new movie with the funny name on Pop Culture Happy Hour podcast, where all the hosts and guests were enthusiastic about it. Plus, it stars our tiny state's hottest star, Aubrey Plaza. So, when my husband and I heard this weekend that My Old Ass was now on Amazon Prime, we decided to watch it. It exceeded our expectations!

Eighteen-year-old Elliott, played by Maisy Stella, loves her family and friends, but she can't wait to leave her tiny hometown and her family's cranberry farm in rural Ontario. In just three weeks, she heads off to the University of Toronto, and she can't wait for her real life to start. Elliott and her two best friends, Ruthie and Ro, go camping one night on an island (where they live, on a series of lakes, they get around mostly by boat). In a last hurrah, Ro has secured some hallucinogenic mushrooms. They each take them around the campfire, and the other two girls seem to be enjoying themselves, while Elliott thinks nothing's happening for her. Then her 39-year-old self, played by Aubrey Plaza, appears next to her on the log. The two of them talk long into the night, and though older Elliott doesn't want to mess anything up, when pressed by young Elliott, she finally gives her some advice and adds a cryptic warning. That encounter (and others that follow) changes Elliott's immediate life in ways she never could have imagined.

We both loved this coming-of-age movie! Yes, it's an odd premise (Aubrey kind of specializes in quirky), but it is executed perfectly. The cast is great, especially Maisy Stella as young Elliott, the writing is top-notch, and the cinematography is wonderful. The setting was so gorgeous that I looked up where it was filmed: Muskoka Lakes, Ontario. It is billed as a comedy, and we both laughed plenty throughout the movie, but at the end, we were both crying (in a good way). It's beautiful, funny, heartwarming, and moving. Highly recommended (so much so that I felt compelled to review it after saying I wasn't going to write any more movie reviews!).

Currently available on Amazon Prime.

I'm grinning again just watching the trailer!

Weekly Inspiration: Books, TV, and Movies to Tickle Your Funny Bone

Hey, chronic illness spoonie friends! Earlier today, I was updating and sharing an older post of mine from 2019, Weekly Inspiration: Laugh!, when I realized it's been a long time since I've written a new Weekly Inspiration post and I could really use some laughs right now. 

After feeling the best I have felt in years during the first six months of this year (not a single crash day!), getting COVID in July, and slowly crawling my way back from that over the next three months, I was doing pretty well by September and back to enjoying some camping trips with my husband. But for the past three weeks, I've had flu-like aches every day, which tells me my immune system is overreacting to something, most likely a flare-up of yeast overgrowth again. I've gone back to a super-strict diet with almost zero carbs to try to get control of it again, but between that and the state of the outside world, I'm feeling pretty discouraged. 

The prescription? Laughter! As I explained in that older post, laughter has very real physical health benefits ... and it just makes you feel good! So check out the hilarious video clips and funny TV, movie, and book recommendations I made in that old post. And here are some more current recommendations for TV shows, movies, and books that will tickle your funny bone and make you LOL.

 

Funny TV Shows

My husband isn't big on straight-up comedies on TV (though my sons and I love to laugh over episodes of Bob's Burgers or The Office), but we both love to watch TV shows that combine a great sense of humor with drama or suspense. Here are some of our favorites, reviewed in the past two years (links to my reviews with trailers), that make us laugh out loud:

The Diplomat - It's the perfect time time to remind you of this outstanding show that has it all because it just returned for its second season on Netflix. It's got loads of suspense and international intrigue, but it's also so hilarious that we often had to pause and go back a bit because we were laughing so hard we missed a few lines! Great writing & acting.

Somebody Somewhere - This HBO Max show is so great that we watched all three seasons in record time. It's laugh-out-loud funny, but with great emotional depth and plenty of heart. Not for the easily offended--nothing is off-limits in this show!

Shrinking - Another wonderful show just back for its second season, on Apple TV. Starring Jason Segel and Harrison Ford as therapists who work in the same office. It's another show that delves into deep issues like grief but with a great sense of humor. It shares some creative DNA with Ted Lasso, and it shows with the same blend of heartwarming drama and laugh-out-loud moments. If you didn't think Harrison Ford was funny, wait till you see him in this role!

Poker Face - This fun, twisty mystery series is built around its main character, played by Natasha Lyonne, so besides suspense, you also get plenty of clever wit. On Peacock - we're still waiting for season 2!

 

Funny Movies

Again, my husband isn't much for straight-up silly comedies (and honestly, neither am I), so our favorite movies that make us laugh always have other elements. Here are some we've enjoyed that were funny:

Hit Man - this 2024 Netflix movies defies categorization: it's kind of a romantic thriller comedy. It's based on a true story of a man who helped the police department by occasionally pretending to be a hit man, so they could arrest whoever hired him. Twisty, suspenseful, action-packed, and funny. Just a lot of fun!

American Fiction - Nominated for a Best Picture Oscar and with one of the highest ratings on Rotten Tomatoes, we loved this movie! It's very funny, but it's also poignant, heartwarming, and thoughtful. Highly recommended.
 

Flora and Son - This heartwarming, funny movie about a mother and son connecting through music is uplifting and delightful. It will leave you smiling.

 

Funny Books

Apparently, I haven't been reading many funny books lately, based on my recent reviews. I love a book with a sense of humor, but my favorites are often books that will make me both laugh and cry ... and that's not really my purpose here. So, I'll include some recent reads but also some from a bit further back that are guaranteed to make you laugh. And definitely check out that old post because it did include some great books.

Why We Read: On Bookworms, Libraries, and Just One More Page Before Lights Out by Shannon Reed - In this funny, comforting, informative memoir, the author talks about her experiences reading and teaching literature in both high school and college. I was often nodding along or laughing out loud.

Remarkably Bright Creatures by Shelby Van Pelt - This heartwarming story is about connections, loss, and family. It has great characters and an excellent sense of humor.

The Verifiers by Jane Pek - This debut novel is a fun, suspenseful mystery with a great sense of humor. And book two, The Rivals, just came out!

 

What TV shows, movies, and books make YOU laugh?

I'd love to hear about them!

Please share your own recommendations in the comments below.

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

Excellent Medical Explanation of Exertion Intolerance (PEM) in ME/CFS & Long-COVID

I was crashed today, for mysterious reasons only my body understands, so I settled in to watch a video I bookmarked ages ago: Dr. Todd Davenport speaking on Insights on the Physiology of Post-Exertional Symptom Exacerbation (PESE) in 2022 at the San Diego Pain Summit. PESE or PEM is the hallmark symptom of ME/CFS and now, long-COVID, but so few doctors know about it or understand it. This conference seems to be focused on medical professionals and especially physical therapists, and Todd's talk provides a much-needed medical explanation to this audience as to why exercise--that may be good for other conditions--is harmful to those with ME/CFS and long-COVID.

PESE is such a far better term than Post-Exertional Malaise (PEM). Anyone who has spent days, weeks or even months pinned to their couch or bed simply from taking a walk or going to the store or attempting to make a meal for themselves knows that "malaise" is such an inadequate word for the total decimation we experience after even mild exertion.

Todd's talk at the Pain Summit is a fascinating exploration of the medical and physiological basis for PESE/PEM. He shows data that proves that the PESE experienced by ME patients is completely different than the way that deconditioned people react after exercise. This would be excellent to share with any medical professionals, including doctors who suggest graded exercise therapy (GET) and physical therapists who work with any patients with ME/CFS or long-COVID. Todd has also included the research study references that back up his data, for anyone who wants to learn more (or for doctors who don't want to watch the video--I recommend copying his scientific references and printing the list for your own doctors or PTs).

You can watch Todd's excellent presentation, Insights on the Physiology of Post-Exertional Symptom Exacerbation (PESE), on YouTube (with the references listed below in the notes - click on "... more" below the video). (Note that I normally include videos in the body of my blog posts, but this one is unavailable for embedding that way, so it has to be watched at the YouTube link.)

If you have ME/CFS or long-COVID and are going to physical therapy for any reason, like an injury or rehab after surgery (hopefully not as a "treatment" for your disease), I also recommend printing my Guidelines for PT for Patients with ME/CFS or Long-COVID (it includes a PDF document you can print and take to your PT), which will educate your physical therapist on the basics of PEM/PESE and how to work with you safely, without exacerbating your symptoms.

I had the pleasure of "meeting" Todd (virtually) when we were both invited to speak in a webinar hosted by Physios for ME, a UK organization of physical therapists who work with ME patients, called Heart Rate Monitoring for Post-Viral Fatigue Syndrome and Myalgic Encephalomyelitis. Todd spoke during Part 1 which explained the medical/scientific basis for PEM/PESE and the usefulness of heart rate monitoring, and I spoke during Part 2, which featured patient experiences using a heart rate monitor.

You might also find useful my post on Heart Rate and Post-Exertional Crashes, which explains in simple terms why monitoring heart rate can help to prevent crashes and how to calculate an estimate of your personal limits, and my article, Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS (it also applies to long-COVID, though I wrote it before 2020).

I hope you find this information helpful for you and your doctor.

Do you use a heart rate monitor?

Do you practice pacing, staying below your anaerobic threshold?

Please share your own experiences in the comments below.

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

The Joys of Fall

I thought I'd combine a quick personal update with sharing my latest camping vlog. This past month has been so busy here! I love fall with the cooler weather (ME/CFS has made me so heat intolerant) and brilliant foliage, but it seems to be flying by. We did manage a nice, relaxing 9-day camping trip at the end of September, with stops in two beautiful state parks in New York (check out my vlog from the trip) to make up for having to cancel our July/August vacation due to my slow recovery from COVID. 

Kayaking on beautiful Gilbert Lake in NY

My husband and I celebrated our 35th anniversary at the end of September with a rare dinner out, though since getting COVID again, I am even more nervous about restaurants. For my husband's 70th birthday at the start of October, I planned a big surprise: a golf weekend in nearby Maryland for him, our son, his local golfing friend, and his friend from high school who flew up from Texas for the occasion! We managed to surprise my husband, and they had a great time golfing within view of the Chesapeake Bay and staying at the Airbnb I rented. The following week, his Texas friend's wife flew up to join him, and they spent the week here. She and I had never met before, but we had so much in common! What an unexpected joy to make a new friend. I was worried the week would be too much for me, but they wanted to see the East Coast and traveled to the beach, the mountains, Philadelphia, and New York City. And when they were here, we very much enjoyed their company.

Out on the deck with our Texas friends!

 

They left on Saturday afternoon and by noon on Sunday, we had our camper packed up and ready to go! I didn't want October (my favorite month) to go by without any camping, so we squeezed in a mini 2-day getaway to Killens Pond State Park, just over an hour away from us here in Delaware. It was a short trip but SO relaxing! We spent a lot of time in our lounge chairs, reading, enjoying the view, and looking at the campfire. Just the break and time in nature we needed. You can watch my short vlog from the trip on YouTube or below:

Back home, we met up with our son and his girlfriend last weekend to visit a local farm market for pumpkins and hot, fresh donuts, our annual tradition. (After zero sugar or flour for the past 10 months due to chronic yeast overgrowth, I even treated myself to a half donut!) Afterward, we went to visit their new apartment for the first time; our son moved out of our house in September.

Our fall tradition!

This week, for reasons I don't understand, I was pretty badly crashed on Monday and Tuesday, for the first time since I got past the worst of COVID. I felt better today--not quite up to where I have been but able to get out for a doctor's appointment, a tiny 10-minute walk among stunning fall foliage, and my neighborhood book group.

Fall colors

 

And now, I am out on our back deck, enjoying the sunshine and warm weather. I've spent a lot of time in this reclining chair out here this week!

My happy place on our back deck in the reclining chair!

Overall, aside from this brief crash this week, I am almost back to my pre-COVID baseline. The first six months of this year were the best I've had in several years, so my energy and stamina aren't completely back to that yet but are getting close.

How are you doing?

Do you enjoy fall? If not, what's YOUR favorite season?

Let me know in the comments below.

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

4-Part Webinar on Severe ME/CFS: Care, Rights & Research

If you or a loved one are among the 25% of ME/CFS patients who are severely affected by the disease and mostly homebound or bedridden, there is a webinar series that you and your caregivers may find helpful. Solve M.E., one of the primary research, patient support, and advocacy organizations in the U.S., is hosting a 4-part series covering care, patient rights, medical care, and advocacy for these most severe patients.

Part 1 on Caregiving has already aired on October 9 and will be available to view on their website or on YouTube (it's not up yet but should be soon). The next 3 parts are scheduled for (links to more info and sign-ups):

Part 2: Legal - November 13

Part 3: Medical - December 4

Part 4: Research - January 15

If you miss the live sessions or they don't fit into your schedule, they will all be available on their website or on YouTube after they air. All Solve ME webinars are free.

I've registered for Solve ME webinars in the past and found them to be very informative.

Are you or a loved one in the severe category?

Have you ever participated in a Solve ME webinar?

Let me know in the comments below.

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

What To Do If You Get COVID, including Paxlovid (Especially for ME/CFS or Long-COVID)

The greatest danger of COVID--for everyone--is that it can cause lingering, long-term or permanent effects. Research (and much experience over the past four years) has shown that COVID often causes damage to the heart and/or lungs, blood clots that can lead to serious, even fatal, issues, and a cluster of severely debilitating symptoms now known as long-COVID (or PASC, post-acute sequelae of COVID). Long COVID symptoms/characteristics can include a long list of serious issues like flu-like symptoms, fatigue, cognitive dysfunction, muscle weakness, shortness of breath, microclots in the blood, neurological symptoms, GI symptoms, and much, much more, often leaving those affected bed-ridden or housebound and unable to continue with their normal functioning. In many cases, long-COVID develops into ME/CFS, an immune disorder triggered by a wide range of different infections (though COVID is turning out to be a particularly strong trigger).

 

Risks of Developing Long-COVID (or of Worsening if you have ME/CFS or Long-COVID)

Studies show that each reinfection with COVID increases the risk of developing long-COVID or other serious complications like organ damage.

For those--like me!--who already have ME/CFS (or long-COVID), a COVID infection or re-infection increases the possibility of worsening the existing condition, temporarily or permanently.

Two of the best ways to reduce this risk--for both those who are healthy and those who already have ME/CFS or long-COVID--are:

Get COVID Vaccines:

Keep up to date with the latest COVID vaccines, if you are able to tolerate them (lots of studies support this; research shows that vaccines decrease your chance of developing long-COVID by 30-50%).

NOTE: Some people with ME/CFS--including me!--are not able to get the vaccines. For me, they make me worse for at least six months and I hardly make any antibodies to COVID anyway (not even when I get infected). But if you tolerate them, it is highly recommended that you stay up to date with each new one that covers current variants. The study about vaccines linked above notes that the mRNA ones provide a bit more protection than the adenovirus ones, though either would help. If you're healthy, they will reduce your chances of developing any lingering, long-term conditions after COVID.

 Take Paxlovid:

If you do get COVID, immediately start taking Paxlovid (or, if you can't tolerate it, another COVID antiviral or other treatment).

The FDA reports that Paxlovid reduces the incidence of hospitalization and death in unvaccinated adults by 86% and also has protective effects for those who are vaccinated.

The research on long-COVID so far isn't clear (and of course, isn't focused on those who already have ME/CFS or long-COVID). 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! In addition, ME/CFS has a long history of responding well to treatment (with antivirals or other medications) of underlying or triggering infections.

What about rebound? I have heard of doctors telling patients (that are high-risk but are typically overlooked, like those of us with ME/CFS) that they don't recommend Paxlovid for them because it can cause rebound. This is not accurate. FDA studies show that rebound is a characteristic of COVID and occurs both in those who take Paxlovid and those who don't. Some studies show a slightly higher risk of rebound in those who take Paxlovid, but rebound just means a few extra days of acute illness and/or testing positive. After reading the research, I decided it was worth it for Paxlovid's protective benefits.

Other Treatment Options:

I know one person who had an allergic reaction to Paxlovid. If you are unable to tolerate it, there are other treatment options (link to CDC).  Molnupiravir is another COVID antiviral. It is slightly less effective at preventing long-COVID symptoms than Paxlovid but is a good option if you can't take Paxlovid. Both of those are oral pills. Remdesivir is a COVID antiviral administered as an IV infusion that is another option.

You can also take (or increase your dose of) herbal antivirals, like olive leaf extract, monolaurin, and l-lysine. I take herbal antivirals every day, but I increased them when I got COVID, as explained below.

  

Testing

I haven't seen this discussed much, but it is very important if you have symptoms that could be COVID to keep testing. Both with this round of COVID and when I had it in 2021, it took 4 days after my symptoms began before I had a positive test!  Fortunately, because of my risks, I was testing every day. I was certain that I did have COVID because my symptoms were so severe (and I just don't catch colds or flus because of my immune dysfunction). But this isn't just true for those with immune disorders. The same thing happened to my son last year when he got COVID. His symptoms began on Sunday, and he didn't test positive until Thursday (by then he was feeling a lot better). He kept testing because of me.

I think this is a very important thing to understand because so often I hear people who clearly have COVID symptoms say, "Oh, it's not COVID. I tested negative." Meanwhile, they're spreading the virus everywhere they go! Keep testing, for at least 5 days, especially if you are in a vulnerable population (like ME/CFS) that needs Paxlovid and/or are in danger of infecting anyone else.

 

My Experiences

Back in early July, I got COVID for the second time. As someone with ME/CFS (an immune disorder), COVID is very dangerous for me, and the first time I got it, in January 2022, it took me five months to return to my "normal" chronic illness baseline. At that time, Paxlovid had just become available but was in short supply, and I was unable to get it. I was extremely sick (i.e. couch-ridden) for about a month, then gradually improved over the following four months, with the help of some treatments. You can read about that in my Relapses and Recoveries post from 2022 (note that while a short course of steroids helped that time, it made things worse at other times and should only be used with great caution and under the supervision of a doctor).

My Experiences with Paxlovid:

So, when I got COVID this July, I immediately messaged my primary care physician (who first diagnosed my ME/CFS 21 years ago and understands it well) to ask for Paxlovid. Unfortunately, she was out for surgery herself, so it took multiple messages and phone calls to her office to finally get Paxlovid, but it was certainly worth the effort for the reasons I explained above. 

I had only one side effect from Paxlovid: a metallic taste in my mouth for the five days I was on it. While this was unpleasant, it was tolerable and went away as soon as I finished my course of the medication. I did have a very small rebound: after beginning to feel better for a couple of days, I had about 24 hours where I felt worse again. Again, that was tolerable.

While I still got extremely sick, my illness trajectory seemed better with the Paxlovid than when I had COVID in 2022. I was bed-ridden/couchbound for about 2 1/2 weeks and then began to slowly improve, even able to begin taking (very short, very slow) walks again in the 3rd week. Since then, I have steadily improved. 

Now, exactly three months after I got COVID, I am almost back to my normal baseline. I track how I feel each day on a scale of 1 to 5 (1 being great and 5 being bed-ridden/couchbound). The first 6 months of the year were the best I've been in years - see my Mid-Year Update, posted the day that I got COVID, hours before my symptoms began! My average of how I felt was 2.2 (with a couple of months coming in at 2.1), which is outstanding for me. You can see what COVID did and my gradual return (I got COVID on July 10):

• Jan - June - avg. 2.2 with 0 crash days (!)
• July - avg. 3.5 and crashed (4 or 5) 55% of the time
• August - avg. 2.6 and crashed 10% of the time
• September - 2.3 (actually 2.27!) and crashed 3% of the time (just one crash day all month)

So, you can see that I am almost back to my own "normal" baseline.

 

What Else Did I Do?

I went back to my notes and blog posts from the early days of COVID and vaccine prep, based on advice from experts to support my immune system.  I made the following changes to my supplements:

For the first month:

• Doubled liposomal vitamin C dose to 2g (2000 mg) a day
• Doubled vitamin D3 dose to 10000 IU/day
• Doubled Zinc Glycinate dose to 40 mg/day 

For the first two months, I increased or added these herbal antivirals:

• Doubled my usual dose of olive leaf extract, from 750 mg twice a day to 1500 mg twice a day
• Added l-lysine, 500 mg twice a day
• Added monolaurin, 600 mg twice a day

Finally, just a few weeks ago, I began taking digestive enzymes, as recommended by my ME/CFS doctor, but that requires a whole separate blog post to explain! It's a new approach that is helping those with ME/CFS and long-COVID and is not related to recovering from COVID specifically; the timing was just coincidental. After trying it for another few weeks, I will report back!

So, that's the research I found and my own experiences.

What have your experiences with COVID been?

Have you taken Paxlovid?

Have any other treatments helped you to recover from COVID?

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.

Fall Camping Vacation Vlog - Nature Videos

Whew, it's been a whirlwind couple of weeks, filled with catch-up medical appointments and family obligations, but before that, my husband and I enjoyed a wonderfully relaxing 9 days of camping in beautiful New York State. We visited two different state parks that we'd never been to before, visited our nephew at college, and found two great bookstores! In this video, you can come along with us on the trip, with lots of videos of soothing, peaceful outdoors (what I love so much about camping), so be sure to turn the volume up to listen to the birds, the breezes, and other sounds of nature.

You can watch the trip vlog on YouTube or here:

I hope you enjoy that little respite as much as I did! I'm ready to go again--could really use the relaxed downtime.

How do YOU enjoy nature?

Let me know in the comments below.

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

Two New Orthostatic Intolerance (OI) Resources to Help Patients & Doctors

Dr. Peter Rowe, MD, of Johns Hopkins is a renowned specialist in pediatric ME/CFS and Orthostatic Intolerance (OI) aka dysautonomia and is recognized as one of the most knowledgeable experts in the world. He directs a growing clinic at Johns Hopkins Hospital in Maryland: Chronic Fatigue Syndrome (CFS) program at Johns Hopkins Children's Center. This has expanded quite a bit from the days when it was just him, and he answered his own phone!

New Book

Dr. Rowe's General Information Brochure on Orthostatic Intolerance and Its Treatment has long been a go-to resource for patients around the globe - I've linked to it many, many times here in this blog!

That valuable information has now been expanded and updated into a book: 

Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment by Dr. Peter Rowe

It is available from:

Johns Hopkins University Press, and

on Amazon

(all book proceeds help to support the clinic.)

New Webinar

Dr. Rowe has been conducting medical education webinars, to help train medical professionals in caring for children, teens, and young adults with ME/CFS. The series is called, Evidence-Based Pediatric ME/CFS Medical Education Webinar series. The first two webinars are available online (links to YouTube):

1 - Evidence-Based Pediatric ME/CFS

2 - Pediatric Orthostatic Intolerance: A Focus on Management

These webinars are SO important. What the ME/CFS patient community needs more than anything is for doctors to become better informed and educated. Even once ME/CFS becomes a standard part of the curriculum in medical schools (and we're a long way from that now), there are millions of medical professionals already in the field who don't understand or even recognize ME/CFS.

So, feel free to watch these videos yourself, but also, PLEASE, share these webinars with your doctors and other medical professionals.

A huge thank you to Dr. Rowe who has devoted his life to our patient community and has helped so many young people in his many decades of working in this often-ignored field. 

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.

Relaxing & Peaceful Nature Videos

Oh, my gosh--I can't believe I haven't written a new post here in three weeks! I did send a newsletter out, so that's a win. Sorry about the gap in posts. Life's been very hectic, and my energy and stamina are still really low after getting COVID in early July. I am struggling to keep up with everything (and not doing very well at that). I have some new treatments to try after a phone appointment with my doctor this week to review recent labs, so I'll fill you in a couple of weeks on what they are and if they're helping.

In the past month, we traveled to see our son for his 30th birthday (highlight: he's working full-time and says he feels the best he's ever felt in his 20 years with ME/CFS!), attended a graduation party, took a 4-day camping trip, and just last weekend, attended a wedding about five hours from here. The wedding weekend was wonderful, filled with our closest friends, but exhausting, as you can imagine! This week was two doctor's appointments, a book group meeting, and a Zoom meeting with our local support group. We are currently packing for another, longer camping trip, and I can barely keep my eyes open!

So, I thought I would just quickly share the vlog I made from that last camping trip--it was a very relaxing few days, and the vlog includes photos and videos of nature--lakes, waterfalls, birds, and more. It's all very serene and peaceful. Remember, as I explained in my book (and here on the blog), even just looking at pictures of nature is beneficial to your physical and mental health, so enjoy!

You can watch the video on YouTube or below:

I'm really wiped out today, but once we leave on this trip, I'm looking forward to some complete downtime, with nothing to do but lie in my lounge chair and read or stare into a campfire and be surrounded by nature.

I hope you enjoy the vicarious camping trip in the video!

How do YOU enjoy nature?

Let me know in the comments below.

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