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.
Last week, I hosted a live chat on my YouTube channel about Coping with Chronic Illness. The chat replay is now available. We shared our tips on coping with chronic illness, including managing the heat, dealing with isolation and loneliness, and coping with restrictions. While this was a general discussion relevant to any kind of chronic medical conditions, a few people asked me specific questions about diagnosing and treating ME/CFS and Lyme disease, so I answered those, too. It was a great discussion!
And apologies to all who follow my blog that I didn't post a notice before the live chat. I fully intended to, but between health ups and downs and computer problems, I didn't get a chance. Next time I schedule a live chat, I will post the date and time here ahead of time, so you can participate if you'd like to.
My Health Update
Looks like I last posted a month ago, in mid-June (again, apologies!), just after a mystery crash knocked me down during a week-long camping vacation. I mentioned in that post that I am trying two relatively new treatments for ME/CFS,. I am also continuing to adjust treatments for hypothyroidism:
Microdosing tirzepataide/Zepbound (a GLP-1 agonist) - I started that last fall, stopped in January, then restarted again in March when I relapsed again (during a time of year when I normally feel much better). After about a month back on it, I recovered from the relapse. In this post, I wrote about why tirzepatide seems to help many with ME/CFS and similar illnesses, why I decided to try it, and my experiences in the first 3 months.
Sirolimus/Rapamycin - I started this in May, following the protocol used in an ME/CFS study, where many patients improved. I talk more about the study and my own informal survey of patients that led me to try it in this post. I slowly ramped up my dose, from 1 mg once a week to 6 mg once a week. In late June and early July (when I was up to the full dose), I was still experiencing a lot of mystery crash days (I did not have a single crash day last year, from March to August), so last week, I reduced the dose back down to 3 mg (I seemed to feel better during that week when I looked back).
Treating Hypothyroidism - I wrote all about this topic a few years ago, in a post called Diagnosing and Treating Thyroid Dysfunction in ME/CFS and long-COVID. My thyroid function was much better for a while (probably part of why I did so well last spring and summer), but I could tell my thyroid function was low again, based on weight gain and low energy. I made several changes recently: increased my dose of Armour Thyroid, slightly increased my dose of iodine (after decreasing it sharply this winter based on lab results), and changed the timing of my second daily dose of thyroid meds after finding out that magnesium interferes with their absorption.
Other Supplement Changes - Fed up with so many random mystery crash days, while I was refilling all my meds boxes last week, I also changed any supplements I had changed since January, back to where they were before (when I was feeling better and was more stable) - quit anything new I had started, adjusted dosing back to where it was in January, etc. I stopped niacinamide and biotin, increased my dose of fish oil back to 2/day, and increased Iodoral (iodine supplement) back to 12.5 mg.
I don't know which of those changes helped (I'm usually more analytical and don't change so much at once, but I was frustrated!), but I've been feeling much better the past week and a half--no crash days and feeling more like I usually do in summer, with plenty of energy. I mean, I still need 9 hours of sleep a night and a nap every afternoon, but in between that time in bed, my energy is good!
So, that's what's been going on! I've been recording a vlog ever since I started the sirolimus so I could record its effects, and I hope to post that next week. I'm going to give this new treatments a few more weeks, and then I will write up a summary here on the blog and probably post a summary video, too.
The real test for me--for both tirzepatide and sirolimus--will be the fall, when I usually go into a months-long relapse that lasts through the winter. And the stakes are high this year--my son is getting married at the end of September!
For now, though, I'm feeling better & trying to get caught up on everything after too many days on the couch! I'm even going to take a chance and make some vacation plans.
How have you been feeling lately?
Have you tried any of the treatments mentioned here - or anything else that has helped?
I recently recorded a chronic illness vlog, showing an honest view of my life during an unexpected relapse of my ME/CFS. I usually feel better in spring and summer, so this month-long crash in April and May was a big (and unwelcome) surprise.
Frustrated by yet another relapse, especially during a time of year when I usually feel pretty well, motivated me to dive into some online research of newer treatments being studied for ME and long-COVID. I was specifically focused on treatments that could help to normalize immune function. These relapses of mine (usually in fall and winter) are always characterized by sudden-onset of flu-like symptoms, including sore throat, swollen glands, and severe flu-like aches. Those kinds of immune symptoms indicate that the immune system is over-active, so that's what I was focusing on: how to calm down an upregulated immune system in ME/CFS.
After reading some recent articles, I took a closer look at 3 different treatments that are already available for other conditions and are being studied for ME/CFS and long-COVID: metformin, fluvoxamine, and rapamycin. I read article summaries, watched videos, and looked at research studies. Having narrowed my search down to those three (that had been mentioned in one study as having the potential to correct immune dysfunction in ME), I asked patients in several online patient groups if anyone had tried any of these treatments for ME and what their experiences had been.
The results of this informal survey were very interesting:
Of the 3 people who'd tried fluvoxamine, none said it helped.
Of the 20 people who'd tried metformin, 4 (25%) said it helped them.
Of the 15 people who'd tried rapamycin, 8 (53%) said it helped them. We have a winner!
Besides my own survey, a study using rapamycin to treat ME and long-COVID also had good results.
So, I took all that information to my primary care doctor. Fortunately, she is incredible, listened carefully, looked at the studies I'd printed and my own data from patients, and said, "This sounds great! Let's give it a try! If it helps you, then I can try it with some of my other patients." (she's great!). I started with a tiny dose, following the protocol they used in the study, so I haven't seen any effects yet, but I am recording another chronic illness vlog to document whatever effects (positive or negative) I experience.
NOTE: Rapamycin is the name used in research. The generic name is sirolimus, and the brand name available commercially is Rapamune. You have to get it from a specialty pharmacy (mine was fully covered by insurance and cost me nothing).
So, here is my vlog, following my relapse, my research into new treatments, and my visit with my doctor. You can watch it on YouTube or I will include it below:
For reference, here are some of the resources I read or watched about these treatments & others:
I have written before on this blog about effective treatments that target the unique kind of immune dysfunction in ME/CFS and long-COVID. All of those posts are linked in this Post on Treating Immune Dysfunction, which includes 3 inexpensive, readily available treatments that have helped my son and I over the years, plus resources on treating underling infections.
Do you have immune (flu-like) symptoms?
Have you tried any of the treatments listed here - or anything else that has helped?
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!
Resources for More Information
The following articles and videos include more information, from ME/CFS experts, on treating ME/CFS and long-COVID with GLP-1 agonist medications:
Video: Inside the GLP-1 Study for Long-COVID- Details on an ongoing study. In this video from last fall, they were still seeking participants, but I think they are only using full doses in the study (since that is all that is FDA-approved at this time).
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?
I haven't posted here in a while because the seasonal relapse or worsening of my ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) that hits me every fall/winter came early this year, knocking me down in mid-September. This happens to me every fall: sudden onset of immune symptoms, like flu-like aches, severe fatigue, and sore throat, indicating that my immune system is stuck in an overactive state. This seasonal downturn is very common in those with ME/CFS and long-COVID, and I wrote a blog post, The October Slide: ME/CFS and Infectious Triggers, about it. That post describes this annual phenomenon for many of us, along with one possible explanation: that more exposure to infections at this time of year can trigger this kind of immune activation. It also summarizes many treatments that have worked well for us in the past, including treatments to improve immune function and treatments to help if you are exposed to or actually catch an infection.
However, for the past five years, none of that has been enough to prevent this seasonal worsening in me that lasts longer each year. In 2023, this relapse began in November, last year in mid-October, and this year, in mid-September. And once it starts, nothing seems to help, and it usually lasts until January. So, every year recently, I am couchbound through fall (my favorite season!) and through the holiday season, which makes our travels and family events pure torture for me. Last Thanksgiving, I needed 2 naps just to manage to get through the afternoon and evening, and I felt awful the whole time, wracked with severe flu-like aches. As I said to my husband recently, if anyone "normal" and healthy woke up feeling this way, they wouldn't get out of bed!
So, it's become very frustrating and depressing, especially when the flu-like feelings began so early this year, just before our 10-day trip to New York State to visit family and enjoy some fall camping. Every year at this time, I try a short round (5-7 days) or two of steroids (prednisone) to try to calm down the immune activation but it often doesn't help much. I would probably need a much longer round of steroids to really settle my immune system down, but they have side effects, including worsening my chronic yeast overgrowth (another common feature of ME/CFS and long-COVID, thanks to our immune dysfunction) ... and yeast overgrowth also causes flu-like aches! So, I tried 7 days of steroids a couple of weeks ago, and I felt better the first couple of days but then got much worse again, as I reduced the dose.
I spent much of vacation lying in my lounge chair, but the view was great!
A New Treatment to Try ... and New Hope!
I e-mailed my ME/CFS specialist a couple of questions and let her know I was relapsed again, with immune activation, and she suggested we talk on the phone. Much to my surprise--since we have this same conversation every year at this time!-- she offered me an entirely new treatment that could potentially get right to the heart of the disease--the immune dysfunction--that I hadn't even heard of yet.
She is part of the ME/CFS Clinician Coalition, a cooperative group of all the top ME/CFS doctors in the U.S. They work closely together, watching (and participating in) the latest research, trying things with their patients, and sharing information. She said there was some evidence that the new GLP-1 agonist weight loss drugs helped to normalize immune function in patients with autoimmune disease (while ME/CFS is not technically classified as an autoimmune disease, it is a disease with immune dysfunction at its heart). ME/CFS doctors in the coalition have been trying microdosing (using tiny doses) of these medications and are seeing some remarkable results ... though, of course, it doesn't work for everyone. Here's an excellent article summarizing the experience with ME/CFS, long-COVID & fibro patients so far, and here is a video of a recent discussion by some of these doctors about this new treatment.
So, I'm trying it! I'm very excited to have a new treatment possibility to try, especially something that gets right to the heart of ME/CFS. If I could normalize immune function, then everything else would improve.
It's expensive, though. Even with the microdosing, these are new medications, being used off-label (other than their approved purpose), so insurance won't cover it. The first delivery cost about $350, and that should last me about 6 weeks. However, if it really works, then I could potentially stop taking some of the expensive supplements I take and possibly reduce my dose of certain medications (like thyroid medications and anti-fungals). I talked it over with my husband, and we thought it was worth a try to maybe prevent spending half of every year lying on my couch, unable to do anything.
The one she prescribed for me is tirzepatide, sold under the brand names Zepbound (for weight loss) and Mounjaro (for diabetes), though they're the exact same drug. This is the one that ME doctors have been focusing on, because it has additional actions, besides targeting GLP-1. She sent my prescription in, and I purchased it directly from the pharmaceutical company (Eli Lilly). It comes in small vials, and I do the injections myself (I am used to that with my B12 injections). I think a normal dose for weight loss is 2.5-5 mg, and my doses are 0.5 mg, three times a week. At these lower doses, doctors have found that the side effects are lessened (and I'm actually hoping not to lose any weight, as I lost over 20 pounds a couple of years ago when I got effective treatment for my thyroid dysfunction).
Effects So Far
As of today, I've had 5 doses. The first two were at half dose, just 0.25 mg, just because I was worried about side effects. This week's three doses were the full microdose, 0.5 mg.
Last Wednesday, when I took the first dose, I felt about the same and was very achy (those flu-like immune system aches). But, the next day, I had no aches for the first time in over a month and my energy was great; it was the best I'd felt in months! By Friday, I had mild aches again, but I managed to run some errands and go to Trader Joe's, all long overdue. I was achy Saturday but felt pretty good on Sunday and managed to help my husband with some cleaning.
This week, I've had mild to moderate aches every day. I was crashed Wednesday and Thursday, but I had a lot of stress and exertion the night before (a flat tire on my way home from a medical appointment!) and then yesterday, we had heavy rain all day, which affects my illness.
As that article explains, some people with ME/CFS who tried this treatment felt better immediately, others felt better after 3-5 weeks, and for some, it didn't help at all. So, we'll see!
I'll write more about this treatment, including my response to it, when I have more information to share. If you want to hear more about my fall-winter relapse, immune activation, and how I learned of this new treatment, check out my recent Chronic Illness Vlog on YouTube or below:
Have you tried GLP-1 agonist medications for any reason and at what dose?
Did it help you or did you have any side effects?
Share your experiences (or any questions) in the comments below.
The positive response to my 3-minute video short about ME/CFS for Awareness Day/Month was so great that I realized a longer video with more information about ME/CFS and long-COVID was needed. I searched online for the most commonly asked questions about ME, myalgic encephalomyelitis (also known as CFS or chronic fatigue syndrome) and recorded the video in a Q&A format, covering the basics. Note that I also explain in the video what long-COVID is and how it can be the same as or different than ME/CFS.
In the video, I answer these questions:
What is ME/CFS?
What are the symptoms of ME/CFS?
What does the name ME/CFS mean and where does it come from?
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!
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.
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 1which 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.
It's now been three weeks since my COVID infection struck, on top of ME/CFS, and I am still struggling. Many of the viral symptoms have improved (though I still have a lot of mucus), but I am still severely lacking in energy and stamina. I am now able to sit up for short periods of time most days, so that's an improvement. But, I am mostly still living life from my "couch nest," lying down a lot, and sleeping more than usual.
My writing energy is still very limited, but I did put together a vlog last week, so I thought I'd share that with you. It's hard to see any changes day-to-day because these last three weeks have all felt pretty much the same (I'm sure many of you can relate!), but when I look back at these video clips covering 8 days, I can definitely see some small improvements, which is encouraging. I also shared some moments of joy and even fun with my husband and son. You can watch the video on YouTube or I'll include it below:
I did get some good news yesterday. I checked with my ME/CFS specialist in NYC to ask if she or her colleagues (she's part of the ME/CFS Clinician Coalition) knew of anything to help someone with ME/CFS with recovery from COVID (when I got it in 2022, it took me six months to recover back to baseline). I didn't expect much, so I was surprised and thrilled when she replied immediately to say that, yes, there were some treatments they have been using for patients that get COVID that have been helpful! Yay!
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
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!
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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.
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:
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.
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 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.
One of the top ME/CFS specialists, Dr. Kaufman of the Center for Complex Diseases in California, published a paper with a colleague in 2022 about a supplement that has shown stunning results in his ME/CFS and long-COVID patients. The supplement is oxaloacetate, and in an informal "proof of concept" study (i.e. not a placebo-controlled study), his team gave the supplement at various doses to patients with ME/CFS and long-COVID over six weeks and assessed changes in fatigue scores, using a standard scoring guideline. Results showed significant improvement in both groups of patients (22-28% in ME/CFS patients and 47% in long-COVID patients). They clearly saw that higher doses were more effective. You can read the details of their preliminary study here.
They then began a more formal clinical trial, placebo-controlled and over a longer period of time, for ME/CFS patients. That trial is in progress, but Dr. Kaufman reported on stunning interim results at an ME/CFS symposium last November. You can watch his short (14-min) video on YouTube or below:
He explains that he is mainly a clinician (treating patients), so he keeps the science fairly simple here, and it's an interesting talk. Watch for the results he presents, about halfway through. The trial has so far shown amazing results, not only in reduced fatigue levels but also in patients being able to spend more time upright (sitting or standing), rather than horizontal ... which is, of course, huge.
They are currently recruiting long-COVID patients for a similar trial through the Bateman-Horne Center. You can sign up here.
Other researchers are studying it in ALS and cancer patients, as well.
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.
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.
