What Is ME/CFS? The Basics: Answers to Common Questions

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?
• What causes ME/CFS? 
• How prevalent is ME/CFS and who gets it?
• How is ME/CFS diagnosed?
• How is ME/CFS treated?
• Can ME/CFS be cured? 

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

This video is perfect for sharing with friends and family to help them better understand how ME/CFS and/or long-COVID affect you.

Note that while I briefly discussed effective treatments for ME/CFS and long-COVID in the video, you can find a summary of ALL the treatments that have helped my sons and I here. 

 

Do you have other questions about ME/CFS and long-COVID not addressed in the video?

 

Have you had trouble explaining your illness to friends and family? 

  

Share your experiences (or any questions) in the comments below.

 

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

2024 Year in Review: Still Riding the Chronic Illness Rollercoaster!

For the second year in a row, I'm referring to the past year as a rollercoaster (in fact, Riding the Chronic Illness Rollercoaster is the name of a chapter in my book!) because that's the best description for it, with major highs and major lows last year in my life with ME/CFS and Lyme. In this post, I'll provide a brief overview of my year and what caused those ups and downs, review the many different treatments I tried (or restarted or stopped) and what helped and what didn't. I also made a video summary, if you prefer to watch (I'll link it here after it's edited and posted or you can check my YouTube channel).

NOTE: I like data and am an analytical person. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" Or you can watch my short video, Chronic Illness: Tracking How I Feel, Symptoms, and Treatments. I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. I also rate my exertion each day on a 1 to 5 scale. And for details on the process I use for goals, which focuses on taking very small steps toward what I want in my life, see my video, Setting Goals When Chronically Ill (Improve Your Life in Tiny Steps).

 

Overview of My Health in 2024

Average How I Felt = 2.5 (1 is good; 5 is bad)

• Same as 2023.
• My best months were 2.1, and my worst was 3.5 (rollercoaster!).
  

Average % crashed = 14% (meaning I was couchbound/bedridden 14% of the time)

• Crashed = a 3.5, 4, or 5 on my scale, unable to function, stuck in bed or lying on the couch.
  
• The average doesn't tell the whole story because there were six months without a single crash day and months where I was crashed more than 50% of the time.
  

Average exertion = 3.8 (on a scale of 1 to 5)

• Same as 2023.
  
• Again, there were good months and bad. 
  

Month-by-Month Changes & Why:

January to June - I felt great, not a single crash day in six months! My average "how I felt" each month was 2.1 or 2.2, which is very good for me. My average exertion was 4 on a scale of 1 to 5! I was active and feeling great and not crashing at all.

July/August - I got COVID in early July (my second time), and my crash-free streak came to an abrupt end. I was very sick but got on Paxlovid immediately (see treatments below). I started to recover in August.

September - By the end of September, I was fully recovered from COVID and back to my excellent baseline of the start of the year, able to be active again without crashing and feeling good every day.

October to December - Around mid-October, I went into an ME/CFS relapse, with severe flu-like aches every day (a sign that my immune system was over-active). I have no idea why it started; it's likely I was exposed to something (someone's cold, for instance). I was still in terrible shape by Christmas but finally recovered back to a good baseline in the second week of January, the relapse ending as mysteriously as it started.

 

Treatments - What Helped & What Didn't

Treating Hypothyroidism in 2023 - I spent all of 2023 working with my primary care doctor to try to effectively treat very low thyroid function. I got lab tests every two months, she adjusted my meds based on the results, and by the end of the year, I was feeling much, much better with great energy. In early 2024, I continued that treatment and gradually added Iodoral (iodine supplement), which also helped. All of this is explained in detail in my Diagnosing and Treating Thyroid Dysfunction post (a very common issue in ME/CFS and long-COVID). I also lost 19 pounds just from treating hypothyroidism, with no other changes. Helped a lot.

Carnivore/Keto Diets (low carb) - At the start of 2024, I changed my diet dramatically to try to get yeast overgrowth under control (I was already doing everything else on the list in my Treating Yeast Overgrowth post.) I ate a mostly carnivore diet for the first three months, and I immediately felt much, much better (the end of 2023 had been rough, too, due to yeast). In April, I transitioned to a keto diet (I explain paleo, keto, and carnivore diets in this video) and kept that up. I lost an additional 7 pounds from the diet changes, and my cholesterol and triglycerides have never been lower! My husband, who is healthy, lost 20 pounds just from the diet changes. Helped a lot.

Changed Probiotics & Added Pancreatic Enzymes Based on Test Results and Goals - I worked with our functional medicine specialist (someone who looks at the body as a whole instead of just one system). She did a Gut Zoomer test for me (stool testing offered by Vibrant Labs) which provided a lot of interesting information. Based on my results, I started pancreatic enzymes (see Digestive Enzymes below) and switched to different probiotics, based on both my test results and my goal of controlling yeast overgrowth. Helped with controlling yeast.

Stopped Inosine - Inosine is an immune modulator that helped my son and I for over 15 years (read more about inosine and how to use it here). I had been taking a break from it (necessary to keep it working) and when I tried to restart it last year, it seemed to overstimulate my immune system and maybe make my yeast overgrowth flare up. I've noticed that my immune dysfunction in the last few years is more overactive/up-regulated, where it used to be more of a mixed bag. So, for now, I'm not taking it. But it helped for decades, and I will definitely keep it as an option. For now, stopping it helped.

Paxlovid - This was essential to my quick recovery (for someone with ME/CFS) from COVID last year. When I got COVID in 2022 and Paxlovid was not available, it took me 6 months to recover back to baseline. This year, it took about 2 months - big difference! You can read more about my experiences with COVID and Paxlovid here. Helped a lot.

Oxytocin Nasal Spray - This is one of several new treatments I tried last year that my ME/CFS specialist recommended, based on new evidence or research. Many articles have been written about oxytocin (often called the "feel good" hormone) possibly being helpful for those with ME/CFS, long-COVID, and fibromyalgia. It didn't help me--and maybe made me feel worse--but it is helpful for some. Didn't help me.

Digestive Enzymes - Another new treatment suggested by my ME/CFS specialist, based on recent research. The studies showed that people with ME/CFS and long-COVID don't fully digest our foods, so digestive enzymes can be helpful. She recommended a supplement, which I got, and also prescribed prescription enzymes. When I picked up the Rx, I found that its ingredients were identical to the pancreatic enzymes I'd been taking all year, except that the supplement had much higher levels of each enzyme. So, I kept up the pancreatic enzymes, added the digestive enzymes, and didn't take the prescription. I think this is what helped me recover that last bit after COVID so that I was feeling good and able to be active again without crashing. Helped.

 LOLA (L-ornithine/l-aspartate) - Again, my ME/CFS specialist suggested this blend of two amino acids based on recent research into the metabolic changes in ME/CFS and long-COVID (read more here). I plan to write a blog post about this, as it is attracting a lot of attention. It didn't seem to help me, but I tried it in the middle of that awful relapse when nothing was helping, so I may try again. Didn't help me but is helping some others.

Valtrex - This antiviral (generic name is valacyclovir) works against all herpes-family viruses (like EBV, HHV-6, CMV, HV-1, etc.). Since it's known that the immune dysfunction of ME/CFS makes these old, dormant viruses reactivate, and my doctor and I knew my immune system was "stuck" in an overactive state, I tried 3 months of Valtrex, but I guess that wasn't my problem this time. It helped me a lot in the past (back in 2006), especially with improved mental clarity (mostly eliminated brain fog) but didn't help this time - again, nothing was helping in those last months of the year! Helped me before but didn't help me this time. 

Prednisone (steroids) - Steroids should be used in ME/CFS with caution, only in specific cases where it's indicated, and only for short periods of time. Again, my doctor and I could tell my immune system was stuck in an overactive state, and prednisone suppresses the immune system, so we hoped it would calm the immune system down for me. Since most with ME/CFS (like me for the first 18 years or so) usually have an immune system that is partly overactive and partly underactive, steroids are not normally helpful and could be dangerous. I tried two rounds of just 5 days each. While it didn't immediately end my relapse, I did see a small improvement after each round (though I don't feel good while I'm on them and need extra beta blockers because it raises my heart rate even more). Probably helped, I think.

Stopped Low-Dose Naltrexone (for now) - As you can see, I tried pretty much everything those last few months! I was desperate. On the theory that any treatment for the immune system might be too stimulating while my immune system was stuck in this overactive state, I temporarily stopped taking LDN. Note that I have been taking it for about 18 years now, and it helped me tremendously for a long time. For now, I'm taking a break. It may be only coincidence, but my relapse finally ended about a week later. I will definitely try to restart it at some point. More info on LDN, how it works, and dosing.  I think it helped?

 

As you can see, I got pretty desperate at the end of the year and tried everything I and my doctors could think of! And my relapse may have ended, much like it started!, coincidentally for mysterious reasons I don't know. But this is why I track how I feel and the treatments I try, to try to see cause and effect.

So far, in 2025, once I got past that relapse around the second week of January, I have been feeling really good, just like during the first six months of 2023. My "how I feel" score has been a steady 2 every single day since the relapse ended, and I have been gradually, carefully increasing my exertion levels again. As of this week, I am walking about 20-40 minutes almost every day (with my heart rate monitor on) and am back to doing small on-the-floor strengthening routines for upper body, lower body, and core three times a week ... and not a single crash! 

Keep in mind that this is all very good for someone with ME/CFS. I still need 9.5 hours of sleep a night (but not 10.5 hours like the past few months), a nap every afternoon, and am still careful to stay within my limits--but those limits are wider now. We are making a lot of travel plans for 2025, so I am hoping my relatively good health continues!

So, that was my 2024.

How was last year for you?

 

What treatments help you?

 

Share your experiences (or any questions) 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.

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.

Summary of Long-COVID Statistics and Recent Research

I recently read an excellent article on long-COVID from PBS News that I wanted to share with you. My time and energy are very limited this week, as we were away last weekend and are leaving again Sunday (but this time for a few days of relaxing camping), AND we have unexpected house guests this weekend! But I wanted to at least share this article with you.

You can read the article here: Scientists Are Piecing Together the Puzzle of Long-COVID. Here's What to Know. It is relatively brief and written in clear language for regular readers (not doctors or scientists). A few interesting points:

• Percent of those infected with COVID who get long-COVID (i.e. lingering symptoms or effects) has gone down since 2020, in part due to vaccines and in part due to different variants of the virus.
• Unvaccinated people are at twice the risk of developing long-COVID as those who've been vaccinated.
• Post-exertional malaise (PEM) is on their list of symptoms, but the article doesn't mention the cross-over with ME/CFS.
• Many who develop long-COVID had only a mild infection at first.

Overall, the article emphasizes the disabling severity of long-COVID and the danger of developing it. I think this is a good one to share with friends and family (especially those who think COVID is no big deal and they don't need to keep getting vaccines!).

Hope you find the article informative and helpful.

Chronic Illness Vlog: COVID and ME/CFS - Small Improvements, Small Joys

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! 

She called in a prescription for me to a compounding pharmacy for oxytocin nasal spray, and I ordered a powdered combination of two amino acids, l-ornithine and l-aspartate, from Amazon. I won't received either one until the end of next week, but once I start them, I will let you know if they help. And I need to investigate and research both a bit further, but here is one paper on oxytocin and COVID (from June 2020!). No clinical trials yet on the two amino acids, but Open Medicine Foundation researchers released a preprint just a month ago of their data analysis showing that these two amino acids might help ME/CFS and long-COVID. Cutting edge science! Reason for hope.

P.S. I was trying to work on my monthly newsletter for my e-mail list today, but I just didn't have the energy. I'll try to get it out next week.

 

Have you had COVID? How long did it take for you to return to your usual baseline?

Let me know in the comments below.

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

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

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

How Did I Get It?

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

Course of the Illness So Far

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

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

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

Paxlovid

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

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

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

What Else Did I Do?

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

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

Herbal Antivirals:

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

 

Current Status

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

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

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

 

How are you doing?

Have you had COVID? How did it affect you?

Let me know in the comments below.

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

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

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

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

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

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

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

Roadmap to Effective Treatments:

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

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

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

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

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

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

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

Diagnose and Treat Endocrine Dysfunction. ME/CFS causes severe endocrine dysfunction--that's the part of the body that controls hormones, and hormones control everything. Messed-up hormones are behind sleep dysfunction (which can be corrected) and are one factor behind Orthostatic Intolerance, too. Both sex hormones and cortisol are covered in that endocrine dysfunction post link.There a more detailed post on Diagnosing and Treating Thyroid Dysfunction, as it's a complicated topic.

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

 

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

What treatments have most helped YOU?

Please leave a comment below.

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

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

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

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

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

 

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

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

I find all of these studies absolutely fascinating because:

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

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

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

Please leave a comment below.

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

Summaries of 2023 ME/CFS & Long-COVID Research and More

It's somehow the end of January already, and I'm way behind on my planned 2023 wrap-ups, so I wanted to get this one up before any more time passes. There are two excellent summaries, looking back at 2023 for ME/CFS and Long-COVID patients, that I want to share with you.

2023: Looking Back on Back on a Year of ME/CFS Research

This post, written by the blog ME/CFS Skeptic: a Critical View into ME/CFS Research, provides an easy-to-understand, patient-centered summary of about 15 different ME/CFS and long-COVID research studies that the authors deemed "most interesting." They've already done the work of explaining each study in simple terms, so you can just scroll through their summary. Some interesting things I noted while reading it:

• Some aspects of ME/CFS that have long been accepted--like low NK cell function--were not confirmed by the studies cited here. I suspect that is mostly due to differences between patients, how we are all so different, as well as some studies focusing on small groups and differences between short-timers and those who've been ill for much longer.
• Virus studies failed to find any specific viruses causing ME/CFS and concluded that we likely have dysfunctional immune responses ... which we already know! But it's good that researchers are beginning to zero in on that.
• New population studies seemed interesting at first but were definitely flawed. One relied on asking people if they'd been diagnosed with ME/CFS by a medical professional--we all know how rarely that happens! Some were surprised the number seemed so much higher than before COVID, but I suspect it is actually much higher.
• Good news that researchers continue to dig into genetics and the gut. Now, I'd like to see more research focused on immune dysfunction!

Looking Back at 2023 in ME/CFS, Long-COVID, and FM - the Most, Best, Cleverest, and Strangest

As usual, Cort Johnson of the Health Rising website (highly recommended!) has pulled together a lot of complex information into a very easy-to-read, even entertaining format, with all kinds of creative "best of" and "worst of" categories. While some reference the same studies as the above summary, there is a lot here that is new. Some highlights:

• Encouraging findings in the field of mitochondrial dysfunction.
• Lots of interesting findings in the growing field of long-COVID research, including high serotonin levels.
• Call-backs to research from decades ago that noted that clotting could be a factor in the blood of ME/CFS patients (I remember these studies and took them to my doctor), now in the forefront again, thanks to the study of micro-clotting in long-COVID.
• New funding for "long Lyme" (previously called chronic Lyme), which is long overdue.
• New "long cold" research on another coronavirus that causes colds and can lead to ME/CFS. The more researchers expand this concept of "long" infections (i.e. post-infection ME/CFS), the more it will help all of us.
• Plus, a new study on lasting illness after the COVID vaccines. I experienced this, as did many others, and patients have long reported that vaccines can trigger ME/CFS--another step forward in awareness among the medical profession!
• New clinical trials for treatments.
• The Mayo Clinic's massive turn-around from the worst place to go for ME/CFS in the US to actually listening to patient advocates and updating their protocols.
• There's a whole lot more here to peruse, all written in short, snappy (even fun) blurbs - scroll through.

 OK, time for some dinner! I hope you find all of that as interesting as I did.

As for me, my months-long severe relapse that ended 2023 has mostly stayed in 2023. I'm pleased to report that I am doing much, much better, mostly due to a new diet that finally got my yeast overgrowth under control and all the work my doctor and I did last year to normalize my thyroid function. The first few weeks of the new year, I felt better than I have in years! I'll write about it here as soon as I can. In the meantime, this Chronic Illness Vlog 1/8/24: I'm Back, Baby! The Diet That's Helping explains some of it, and I'll be posting a new video all about the diet I'm trying next week.

I hope you find all this research news as encouraging as I do!

ME/CFS Treatments: Tried & True and New Hope

I recently came across two interesting pieces--an article and a video--from ME/CFS specialists regarding treatments and even, potentially, the possibility of a cure. I wanted to share both with you here.

Tried and True

This blog post article was written by Dr. Eleanor Stein, who is both a patient of and doctor for ME/CFS. You can read her story and learn more about her blog here; her mission is to share science-based information on ME/CFS. This particular blog post is called A New 4-Step Treatment for the Severely Ill with ME/CFS, which she says comes from Dr. Dag Stola and his team at the Røysumtunet Hospital, a center for severe ME/CFS patients in Norway. Most of this "new" treatment plan was nothing really new but the basics that I've known (and used) for years. It's a short article you can read for yourself and share with your doctor, but some of the treatments included are:

• Hydration, with some specific products recommended (we like GU Brew)
  
• B1 - thiamine or benfotiamine (the one we take)
  
• N-Acetyl-Cysteine (NAC)
• Multi-vitamin (we take individual vitamins since we are high in some and low in others)
  
• Multi-mineral (we take individual minerals; the combo pills sometimes contain the wrong types)
  
• NADH (the one I just ordered)
  
• CoQ10 (I take this one - supposed to be better absorbed)(this one combines NADH and CoQ10)
  
• Methyl- and/or Hydroxy-B12 injections (more info at link)
  
• Low-dose naltrexone (though the doses recommended here are much too high for many ME/CFS patients) - more info at link.
  
• Low-dose aripiprazole

I've never heard of that last one, but my son and I have been using most of the rest for many years, and they do help somewhat. I've included links to my own blog posts, if you want more detailed information on any of those. Many of the supplements were mentioned in my post on preparing for COVID vaccines. I certainly wouldn't argue with any of these, but it seems to leave out a few things that have helped us the most over the years:

• Treating orthostatic intolerance (OI), beyond just hydration, which can only do so much on its own.
• Correcting sleep dysfunction - for us, this was absolutely critical. My son recently went through an insurance change/gap and ran out of his meds for correcting sleep dysfunction (not sedatives) and definitely noticed the difference!
• Treating immune dysfunction - this list does include low-dose naltrexone (LDN), but there are other ways to help normalize immune function as well. My blog post at the link also discusses treating underlying infections, which can be extremely valuable, depending on the patient.
  

So, it's an interesting list of treatments, though sort of an odd assortment, based on our experiences. I suppose if you are starting from no treatments at all, as so many patients are, then that's a decent starting point ... though I would tackle sleep dysfunction and OI early on, since they help with everything else. 

I did notice the inclusion of NADH on that list, something that I tried early on in my illness, almost 20 years ago, and had forgotten about. The blog post says the research is mixed on NADH but it does seem to help some patients, so I'm going to give it another try, starting next week.

New Hope

And for a completely different perspective, I was fascinated by this short, 10-minute video from one of the top ME/CFS researchers in the world, Dr. Ron Davis, whose son has severe ME/CFS (so he is highly motivated!). Some of this brief video went over my head--there is some scientific stuff in here--but it's very short, and I was interested to hear about some of this new research. Dr. Davis explains it for us laypeople. He also discusses how crashes keep the cycle going, which I found very thought-provoking. This brief talk is titled Is ME/CFS Curable? and Ron's conclusion was that yes, it probably is. You can watch the 10-minute video on YouTube or here below: 

 

Fascinating ... and this video definitely gives me hope for a better future for us all! And I've been thinking a lot about what Davis says about how crashes perpetuate the disease. Not really news, but he's got me thinking that I'm not resting enough. I've been stuck in a crash for more than a week, so today I am newly motivated to try to rest as much as possible and not push past my limits.

Which treatments have helped YOU the most?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

 

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