I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I started this blog on February 16, 2006--20 years ago this week! Wow, that's hard to believe. In a couple of weeks, on March 1, I will hit the 24th anniversary of becoming ill. I actually started an "online journal" on Live Journal even earlier, in April 2003, just a year after I first got sick, but I don't think anyone ever read that!
My family in 2006 - I was taller than my sons!
My first blog post here was Our Approach to Living with Chronic Illness, with a little background about us and the way we live. It's interesting to me that way back then, I was referring to our "new normal" (the title I gave my book 14 years later!), to finding joy in every day, and balancing hope and acceptance--all topics I write about here on the blog often.
Ironically, my second post, Is It the Weather?, was about how the weather can affect my physical symptoms and condition and how frustrating that is since I can't do anything about it. I am currently in the midst of a weeks-long relapse that I am certain is due, at least in part, to this nonstop cold, gloomy, overcast winter we're enduring! Last Friday, I suddenly felt good again and my aches had disappeared (just as I describe in this 20-year-old post). As I wondered aloud what caused the sudden shift, my husband pointed to the blue sky. It's still just as discouraging!
My very first Weekly Inspiration post (a feature I kept up from 2006 to 2024), Weekly Inspiration: The Power of Hope was about a book that is still very important to me, The Anatomy of Hopeby Dr. Jerome Groopman, MD. In fact, when my husband was recently diagnosed with cancer, I pulled the book off my shelf and gave it to him to read.
Top Blog Posts
I'm not sure whether the analytics on Blogger (this platform) go all the way back to 2006, but it says I have posted 1,781 posts, with almost 3 million views.
The most popular blog posts (most views at the top) during that time have been:
Effective Treatments for ME/CFS (this link goes to the tabbed page at the top of my blog, which is more up-to-date than the original blog post).
As you can see, all of the top 10 posts have to do with treating ME/CFS (and long-COVID, added since 2020), something all of us patients are always eager to learn more about. That's been my focus more recently, too, as I've had less time for blogging, though I greatly enjoyed writing about emotional coping, inspiration, and TV and movie reviews here for many years.
YouTube Channel
This week also marks the 5th anniversary of my YouTube channel, started on February 19, 2001 (apparently, I like to start big new projects in February!). There is a long playlist of videos there on Living with Chronic Illness, though my channel also includes lots of videos on books & reading, travel, and the outdoors. The chronic illness playlist includes videos on treating ME/CFS and long-COVID, chronic illness vlogs showing what my daily life is like, inspirational topics, chapters from my book, and more.
Our family now (we're expanding!)
Thank you to everyone who has visited my blog these past 20 years and all those who commented on my posts and interacted with me. I developed some wonderful relationships through this blog. That's what's made all this hard work worthwhile!
When did you start visiting my blog?
How long have you been sick?
How has my blog been helpful to you over the years?
In this post, I will catch you up on my experiences the past three months with a new experimental treatment available for ME/CFS and Long-COVID, as well as other immune disorders like autoimmune diseases: microdosing (tiny doses) of the popular weight loss drugs, GLP-1 agonist medications, like tirzepatide (sold as Zepbound and Mounjaro). Through experience, doctors have noticed that when prescribing these medications for weight loss or diabetes for patients who also have autoimmune diseases or other immune disorders, the underlying immune diseases improve--sometimes dramatically--often even before there is any significant weight loss. I've been microdosing tirzepatide for about three months now, and it is definitely helping me.
NOTE: My apologies for not posting on the blog for almost two months. Our lives were turned upside down in early December when my husband was diagnosed with cancer, GIST sarcoma. Since then, in addition to the usual stress and exertion of the holidays, we've also had multiple trips to Philadelphia, to the Fox Chase Cancer Center, my husband got COVID for the first time two days before Christmas, and he had surgery on January 7. Of course, he's the one who usually takes care of me, and the holidays are always tough for me, so while he had COVID and was recovering from surgery, I had to do everything he usually does around here, including grocery shopping, dishes, etc. Things are looking up now, but it's been a rough couple of months.
Watch the Videos:
I have already discussed microdosing of GLP-1 medications on my YouTube channel in two videos, so you can get all the details there, if you prefer video. If you prefer to read about this topic, just scroll past the two videos.
For the past 5 years, I have experienced a severe relapse of my ME/CFS every fall and winter, feeling like I have the flu every day for months. My primary symptoms during these relapses are severe flu-like aches and complete exhaustion, and my stamina during these periods drops considerably. I usually spend most of the late fall and winter lying on the couch because any exertion at all worsens my condition.
Last year, the seasonal relapse started earlier than ever, in mid-September (in 2024, it started in October and in 2023, in November), and that was after a very good spring and summer, filled with travel and outdoor activities. I still had ME/CFS--needed 10 hours of sleep a night, a nap every day, piles of medications and supplements, restricted diet, and heart rate monitoring during any activity--but I felt good most days, was able to be fairly active (for someone with ME/CFS), averaging 5000-6000 steps a day, and didn't have a single crash day from March through August! Then, September hit, and I was back on the couch.
I e-mailed my ME/CFS specialist to ask a question, and she suggested we do a phone consultation. On the phone, I told her my relapse had started even earlier. We have this conversation every year, but much to my surprise, this time, she said she had a new treatment to offer me: microdosing GLP-1 medications. She explained that doctors around the world had noticed that when they prescribed these medications for weight loss or diabetes, their patients with underlying immune disorders, like autoimmune diseases, saw considerable improvements. She also explained that the other ME/CFS doctors in the US ME/CFS Clinician Coalition (they all work cooperatively and share information) had been trying it with their ME/CFS and Long-COVID patients. Like anything, it doesn't work for everyone, but the results so far have been promising.
Medication
She explained that for immune disorders, the doctors were focusing on tirzepatide (marketed as Zepbound for weight loss and Mounjaro for diabetes). Later, my primary care physician explained why. Most of these weight loss medications only affect one receptor on the body, glucagon-like peptide-1 (GLP-1) receptors. But tirzepatide acts on 2 different receptors, both GLP-1 and glucose-dependent insulinotropic polypeptide (GIP). Doctors have seen that this dual-action tends to be more effective when using the medications to treat immune disorders (and for weight loss and diabetes). My primary care doctor also told me that a new medication that targets three different receptors is in development now, so that could be even more effective for us.
Because this is an off-label use of tirzepatide (it is only FDA-approved to treat weight loss and type-2 diabetes), my specialist sent my prescription directly to the manufacturer, Eli Lilly, and they shipped it directly to me. Yes, this does mean it is not covered by insurance, but as I'll explain below, the cost isn't that bad when the doses are tiny.
And because I am microdosing, using tiny doses far below what is used for weight loss and diabetes, I do the injections myself. For its FDA-approved uses, they supply auto-injectors, where the syringes are pre-filled, but my doctor just requested the vials of medications so I can measure out the amount myself. I have been self-injecting vitamin B12 every other day for about 15 years, so this is no big deal for me. The needles are tiny, so you barely feel them.
Dosing and Effects
The solution ordered for me contains 2.5 mg/0.5 ml. My specialist suggested I start with just 0.1 ml, which equals a dose of 0.5 mg, injected three times a week, on Monday, Wednesday, and Friday (that's what she and the other ME/CFS doctors had been suggesting). That is about one-fifth of a regular dose. I started on October 22. I felt really good the day after my first dose, with great energy and no flu-like aches at all. However, for the next few weeks, the aches came and went, and my energy varied. I noticed that I generally felt good on the days in between injections and on weekends and had some mild flu-like aches start about an hour after each injection.
Six weeks in, I talked to my doctor again and explained the pattern I was seeing. She suggested either decreasing the dose or switching from three times a week to just two. She said I could play around with the dosing a bit to find what worked best for me. I reduced the dose by half, to just 0.05 ml (a dose of 0.25 mg). The flu-like aches went away after the second reduced dose, though my energy seemed lower.
At week eight, I decided to split the difference and try 0.075 ml (a dose of 0.375 mg). That seemed to be the sweet spot for me, and I have stayed at that dose ever since. I am now on week 15.
The first shipment of 4 vials cost me $300, and with the tiny doses, it lasted me three months! And since I'm buying it direct from the manufacturer, ordering online, I used a credit card that gives us 3% cash back on online purchases, so that gave me an extra little discount.
I have had no side effects at all, likely due to the low dose, and I have not lost any weight. That's good because I lost about 25 pounds a few years ago when my doctor and I worked to treat thyroid dysfunction (very common in ME/CFS and long-COVID), and I am at my normal, healthy weight now.
How It Has Helped
Once I figured out the dosing, I have done quite well with tirzepatide. The flu-like aches that normally plague me at this time of year mostly went away, unless I overdo. My energy and stamina have been pretty good, though not as good as they normally are during the spring and summer. But compared to my usual severe relapse in fall/winter, I have been feeling much better than I normally do at this time of year. I'm usually stuck on the couch all season, unable to do much of anything.
In addition, we have had very high levels of stress and higher-than-normal levels of exertion for me, with my husband's cancer diagnosis, his bout of COVID, and both the preparation and post-surgery periods. He normally does a lot around here, so I had to go to the grocery store, do more dishes, etc. While he was in the hospital in Philadelphia for his surgery, I was staying nearby at the Hope Lodge, spending very long days at the hospital and walking much more than I normally do. And I managed it all without crashing.
Just this past week, the aches have returned, along with an intermittent mild sore throat and less energy, plus increased mucus production. My best guess (it's always a guessing game with a crash!) is that I must have been exposed to someone's cold or something, even though I wear a mask when I'm around other people. Both of our sons have been around a lot, though, and we've shared meals with family members and friends (I haven't yet found a way to eat while wearing a mask!), so it's possible. It doesn't feel like I caught the virus, only that I was exposed and my immune system is over-reacting, as usual. I'm hoping the tirzepatide will help me get past this virally-triggered crash sooner than usual.
As an ex-engineer, I love data! I track how I feel each day, on a scale from 1 to 5, where 1 is great and 5 is non-functional. I calculate the average for each month, as well as the percent of days I was "crashed" (defined on my scale as 3.5 or higher). I made this video about how I track symptoms, etc.
When I compare October, November, and December of this year, I can see the improvement in the numbers. And when I compare this year's fall months against the past two years, the improvement is pretty amazing! (remember that my 2025 relapse began earlier, in Sept, in 2025)
Average of How I Felt and % Days Crashed
202520242023
Avg % Avg%Avg%
Oct3.032%2.513%2.513%
Nov2.43%3.340%3.450%
Dec 2.20%3.245%3.132%
(for comparison, my avg from March - August 2025 was 2.2 with 0 crash days)
I think the change in the % crashed numbers are especially stunning. If it hadn't been for COVID and a cancer diagnosis, I might have even been able to enjoy Christmas this year!
OK, I think that's everything! Let me know if you have any questions.
Have YOU tried any GLP-1 medications (at any dose, for any reason)?
What was the effect on your underlying chronic illness?
