Chronic Illness Vlog: During a Relapse & Searching for Immune Treatments

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: 

• Are All Roads Leading to the Immune System and the Blood in ME/CFS? - article on Health Rising 
• "Screaming Immune Activation": Major Lipkin Study Finds Major ME/CFS Systems Folding Under the Stress -  article on Health Rising 
• A Rapamycin Resurgence: An MD Moves the Needle on His ME/CFS - article on Health Rising
• mTORc1 (TorS) - Unifying Paradigm for PASC, ME/CFS, PAIS - published study about an underlying issue that rapamycin directly targets
• Targeting Autophagy: A Clinical Trial of Low-Dose Rapamycin for ME/CFS, Long-COVID,  and IACCIs  - a video featuring the study's authors that explains the details of the clinical trial: dosing, side effects, improvements, and more.

 

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? 

Please share in the comments below.

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

My Annual Fall/Winter Relapse Started Early, But I'm Trying a Promising New Treatment

My Seasonal Worsening in Fall & Winter Came Early 

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.

 

I am working on compiling some data on this. 

 

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

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

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

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

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

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

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

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

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

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

Do you use a heart rate monitor?

Do you practice pacing, staying below your anaerobic threshold?

Please share your own experiences in the comments below.

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

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

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

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

Part 2: Legal - November 13

Part 3: Medical - December 4

Part 4: Research - January 15

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

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

Are you or a loved one in the severe category?

Have you ever participated in a Solve ME webinar?

Let me know in the comments below.

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

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

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

 

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

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

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

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

Get COVID Vaccines:

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

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

 Take Paxlovid:

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

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

The research on long-COVID so far isn't clear (and of course, isn't focused on those who already have ME/CFS or long-COVID). This large NIH study on the effects of Paxlovid in preventing long-COVID is very confusing. Their conclusions don't match the details they describe. Right in the abstract, they state that Paxlovid during an acute COVID infection did not reduce the chance of developing long-COVID, but then they say that data showed it did reduce the incidence of cognitive and fatigue symptoms post-COVID ... which, of course, is much of what long-COVID and ME/CFS is! In addition, ME/CFS has a long history of responding well to treatment (with antivirals or other medications) of underlying or triggering infections.

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

Other Treatment Options:

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

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

  

Testing

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

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

 

My Experiences

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

My Experiences with Paxlovid:

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

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

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

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

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

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

 

What Else Did I Do?

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

For the first month:

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

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

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

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

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

What have your experiences with COVID been?

Have you taken Paxlovid?

Have any other treatments helped you to recover from COVID?

Let me know in the comments below.

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

 

 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Potential New Treatment for ME/CFS & Long-COVID Shows Promising Results

One of the top ME/CFS specialists, Dr. Kaufman of the Center for Complex Diseases in California, published a paper with a colleague in 2022 about a supplement that has shown stunning results in his ME/CFS and long-COVID patients. The supplement is oxaloacetate, and in an informal "proof of concept" study (i.e. not a placebo-controlled study), his team gave the supplement at various doses to patients with ME/CFS and long-COVID over six weeks and assessed changes in fatigue scores, using a standard scoring guideline. Results showed significant improvement in both groups of patients (22-28% in ME/CFS patients and 47% in long-COVID patients). They clearly saw that higher doses were more effective. You can read the details of their preliminary study here.

They then began a more formal clinical trial, placebo-controlled and over a longer period of time, for ME/CFS patients. That trial is in progress, but Dr. Kaufman reported on stunning interim results at an ME/CFS symposium last November. You can watch his short (14-min) video on YouTube or below:

He explains that he is mainly a clinician (treating patients), so he keeps the science fairly simple here, and it's an interesting talk. Watch for the results he presents, about halfway through. The trial has so far shown amazing results, not only in reduced fatigue levels but also in patients being able to spend more time upright (sitting or standing), rather than horizontal ... which is, of course, huge.

They are currently recruiting long-COVID patients for a similar trial through the Bateman-Horne Center. You can sign up here.

Other researchers are studying it in ALS and cancer patients, as well.

Of course, I immediately searched to find out if this supplement is available now. It is, but at the doses used in the study (1000 mg twice a day), it is very expensive, about $500 for a month. This is the exact supplement being used in the trials, with the higher dose, and available directly through the manufacturer.

Oxaloacetate is already available commercially through Amazon (and other suppliers, I'm sure), sold as a supplement for anti-aging and PMS support (interesting), but these are a much lower dose, just 250 mg per pill (so you'd have to take 8 pills a day to hit the amount used in the trials). I saw two main brands there, benaGene (looks like the same manufacturer as what was used in the trial) and Jubiliance, each with 30 pills for about $50. But since you'd have to take 8 pills a day to get the most effective dose, a bottle of 30 would only last just under 4 days, and you'd need 8 bottles to last a full month, which would cost $400. And I can't tell from the labels whether these contain the exact same molecule as was used in the trial (which specifies AEO anhydrous enol-oxaloacetate). So, I wouldn't recommend going it on your own just yet (unless you can afford the $500/month for the exact one used in the trial). I plan to wait for these latest study results to be published and hope that maybe the price will come down.

This study presents one of the most promising treatments for ME/CFS and long-COVID we've seen so far! And, while the cost is currently out of reach for many patients, it is currently available, which is pretty amazing. Keep your eye on this one! I'll report any additional news I hear about it.

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.

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.

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Recent Webinar: Comparing Immunological Signatures Between Long-COVID and ME/CFS

Earlier this week, I participated in a webinar hosted by the Solve ME organization (which, by the way, has loads of great resources for patients and for doctors, in addition to leading advocacy work and funding research). It was called Comparing Immunological Signatures Between Long-COVID and ME/CFS, which was of great interest to me since earlier research has indicated that immune dysfunction is at the heart of ME/CFS, and my own experiences have certainly borne that out.

You can check out the schedule of additional upcoming webinars here. On their YouTube page, there is a full playlist of all of their past webinars (see the playlist in the right sidebar). And on that page, you can watch the one I just watched, or I'll include it here:

It's an interesting talk, and they've already had some fascinating findings from the first phase of the study, looking at long-COVID patients. Much of it will be familiar to those with ME/CFS, as many of these are well-understood characteristics of our disease.

You'll hear toward the end the question that I asked, though unfortunately, the researcher didn't really understand what I was trying to get across (my fault - hard to explain through a typed comment). I do plan to follow-up with an e-mail to make sure they understand that earlier research showed a change in immunological signature between patients with ME/CFS less than three years and those sick more than three years, so this could confound their data in trying to compare long-COVID patients (by definition mostly less than three years) and pre-2020 ME/CFS patients.

They are still recruiting healthy controls and those with ME/CFS (pre-2020), so I'm sending my info to them to volunteer. Unfortunately, you have to be able to go in-person to the clinic in NYC (though if you live in the NYC area, within 50 miles of the clinic, they can provide a home visit instead).

Finally, a quick apology for not posting much here on the blog lately! I traveled a lot in April and have been pretty run-down the past two weeks. I still haven't had a full "can't get off the couch" crash since the start of the year 😀 but my energy was so low recently that I had trouble writing much. AND, we leave again tomorrow morning for my mom's for Mother's Day and her birthday. Next week, our son and his girlfriend will be staying with us and THEN, life should slow down for us for a while, and I can get back to more regular blogging.

New ME/CFS Research Finding: Protein Disrupts Cells' Energy in Mitochondria

In a series of surprising twists worthy of a thriller and a bit of serendipity, researchers from the NIH's Heart, Lung, and Blood Institute (NHLBI) were studying genetic mutations in a family with cancer and ended up making an important discovery in ME/CFS research. It's a fascinating story, with excellent repercussions for ME/CFS patients, possibly leading to clinical trials in the near future!

One member of the family being studied, a 38-year-old woman, had a genetic mutation associated with the cancer that ran in her family. However, this woman (and none of her family members) had experienced worsening fatigue since she got mono (aka glandular fever) at the age of 16, including an inability to exercise. Sound familiar? As often happens, she'd never been diagnosed with ME/CFS, but clearly, she had all the hallmarks of our disease.

Rough outline of what these researchers discovered:

• Looking for genetic mutations responsible for cancer, they found a mutation in gene TP53. It was causing very high levels of a protein called WASF3 in the woman's samples but not in her siblings.
• The researchers did a literature search of WASF3, and guess what popped up? A little-known ME/CFS study, part of an effort by top ME/CFS researcher Suzanne Vernon, from 2011. She and her team had identified 227 patients with ME/CFS who were thoroughly examined and tested by top ME/CFS experts, creating an enormous set of data (which makes me wonder why the NIH ignored this fabulous set of samples and data when they recently published their "breakthrough" study of a measly 17 patients). The team published a paper that identified eleven different genes that were different in ME/CFS patients versus controls and specifically mentioned WASF3 as possibly being involved in the mechanism of fatigue and exercise intolerance.
• Finding that obscure paper, the NHLBI researchers kept digging and assessed other markers in the woman they were studying, compared to that 2011 ME/CFS paper.
• They also kept digging into the role of WASF3 and the effects when levels are high, as they were in both this woman and the ME/CFS patients studied.
• The researchers found that her muscle tissues had a lower oxygen consumption rate and reduced energy production.
• Next, they used RNA to reduce WASF3 levels in both her cells and healthy controls, and they saw mitochondrial (the energy engines in our cells) function improve across the board.
• Then the researchers produced mice with high WASF3 levels, and guess what? Their exercise capacity and ability to recover was significantly decreased (again, sound familiar?).
• They discovered that high WASF3 levels also causes high Endoplasmic Reticulum (ER) Stress Response. I know that's a mouthful, so let's just call it ER stress, as they do. This is important because high ER stress also occurs in other diseases.

The bottom line:  

These researchers studying cancer have found a new mitochrondrial abnormality that helps to explain not only fatigue in ME/CFS but also our characteristic exercise intolerance/post-exertional malaise. Even better: ER stress is a factor in other diseases, so there are already studies to look at supplements and medications to reduce it. This research team now wants to follow-up with possible clinical trials to try some of these treatments for ME/CFS specifically. And, of course, there's the fact that a whole new team of researchers are now fascinated by the complexities of ME/CFS and motivated to keep digging.

Here is the paper published last year by this team on WASF3 and ME/CFS. And, again, the 2011 paper on 11 genetic abnormalities in ME/CFS that helped them to connect the dots. 

To understand all of this, I read an excellent, easy-to-understand article in Science about the new study. And, as always, I relied heavily on Cort Johnson of Health Rising who worked his usual magic to make this complex series of events and scientific studies understandable. You can read Cort's article here (his sidebar, The Gist, is always helpful for a summary).

Exciting news! 

The fact that the research team is already planning clinical studies gives me hope.

What are your thoughts on these new study findings?

Please leave a comment below.

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New ME/CFS Study by NIH - What Does It Mean?

I first heard about the newly published results of the first-ever NIH (National Institutes of Health in the U.S.) study of ME/CFS when a friend of mine forwarded an article from Medscape to me (I have some great friends). My first impression was, "Meh, not much new, and it was a tiny study," so I have been interested to see how much attention it is getting in the mainstream press and what ME/CFS top experts and advocacy groups are saying about it. Here's a brief summary:

Just the Facts

Bottom line of this study:

• It was tiny - just 17 patients with ME/CFS. 17!! Out of the many millions suffering with the disease in the U.S.
• But it was very comprehensive. Patients in the study underwent extensive testing in a variety of ways over the course of months, and analysis of the data was in-depth.
• Much of what they concluded, we already knew: immune dysfunction is at the heart of ME/CFS, evidence of metabolic changes in people with ME/CFS.
• They focused on its effects on the brain (stemming from the immune dysfunction).
• The researchers definitely took the disease seriously, and the study paper--and all the resulting news coverage--reflects that.
• Because of the tiny study size and the reasons why patients were excluded, we have to be careful about drawing sweeping conclusions about everyone with ME/CFS.
  
• There were some very specific new findings (like specific measures of immune dysfunction) that can be further studied.

 

What Mainstream Media Is Saying

The good news is that it is getting a lot of attention in the mainstream media (which ME/CFS research rarely does), thanks in large part to the connection with long-COVID. 

Here's the NIH's press release (short and to the point), describing the results of the study. Clearly, plenty of news outlets picked up the story. And here's the full scientific study report, published in Nature Communications, a prestigious medical journal.

NPR did an excellent, short summary (you can read it at the link or listen to the story at the top of the page). They interviewed one woman who participated in the study, one of the study's authors from NIH, and four of our own experts: Nancy Klimas, Anthony Komaroff, Maureen Hanson, and Lucinda Bateman. They praised the study for its thoroughness, while noting some of its limitations. NPR was thorough as usual, and this quick update should help to educate the general public.

Science always does a great job of summarizing scientific studies for the general population, and their brief article on this study is good. I think they did a great job of summing it up right in the subtitle: Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome: "megaworkup"revealed brain and immune differences in a small patient group. Of course, they lose points for calling it chronic fatigue and a "mysterious syndrome."

It was also covered by the New York Times, Scientific American, and The Guardian. So, ME/CFS got a lot of news coverage from this report. 

What ME/CFS Experts and Advocacy Groups Are Saying

It's been very interesting to read the analyses of the study from various ME/CFS news outlets, advocacy groups, and patient organizations. 

#MEAction has an excellent, easy-to-read summary, with their analysis of the study's shortcomings and conclusions. Among their observations:

• The study size was so small (17) because the NIH excluded anyone with "comorbid conditions." Well, guess what? Most of us (one earlier study said 80% but it is probably higher) could name a whole list of other diagnoses: POTS, MCAS, EDS, NMH, etc. One could argue (as I often do) that certain "comorbid conditions" are actually an integral part of ME/CFS, like dysautonomia/OI.
• The rigorous requirements of the study (overnight hospital stays, exercise testing, etc. automatically excluded those with severe ME/CFS.
• The study only wanted people in the first five years of illness. Since an earlier (excellent) ME/CFS study showed significant differences in immune markers for people sick less than three years and more than three years, this new study is mixing those together and ignoring those sick longer.
  
• The study concluded that 4 of its 17 participants (24%) experienced spontaneous recovery! We all know that's not indicative of the whole population of people with ME/CFS. Earlier studies have put the recovery rate at about 5%. These strange results are probably due to the way they chose and excluded patients and their tiny sample size.
• The study did require post-exertional malaise (PEM), i.e. exertion intolerance.
• Most of the study's findings of immune and metabolic abnormalities have been reported in previous ME/CFS studies.
• The study authors did find some interesting data suggesting "immune checkpoint inhibitors," which can be followed up in future research.

As always, Cort Johnson of Health Rising website provides an excellent, detailed yet easy-to-understand overview of the study and its findings. 

So, bottom line, it's great that ME/CFS got lots of attention in both scientific journals and mainstream media, and its connection to long-COVID was often highlighted. This study was a good start, but a very long overdue one. Its conclusions have limited use and relevance due to the very small patient sample participating and the reasons why patients were excluded. But, the study did have some findings that warrant follow-up. I'm just glad the NIH is finally, after so many decades, taking our disease seriously.

What are your thoughts on this new NIH study?

Please leave a comment below.

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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!

Clinical Trial for 2 Treatments for ME/CFS & Long-COVID

This is such exciting news for the ME/CFS and Long-COVID communities! Open Medicine Foundation (OMF) is sponsoring a scientifically valid clinical trial of two medications, low-dose naltrexone (LDN) and Mestinon, that are commonly used off-label to treat ME/CFS and long-COVID (off-label means used for purposes other than for what they were FDA-approved).

Dr. David Systrom, MD, is the Director of OMF's Harvard Collaborative Research Center, and an exercise specialist who has seen many ME/CFS and long-COVID patients to diagnose, study, and treat exercise intolerance. He pioneered the use of Mestinon, a cholinergic drug used as a muscle strengthener for other purposes, to treat ME/CFS and long-COVID.

Naltrexone is a very old medication (approved for use in alcohol and drug addiction) that has been used for decades in tiny doses to treat various immune disorders; it helps to normalize the immune system (acts as an immune modulator). There are many dozens of studies on its use in a wide variety of diseases ... but, as it often the case, none specifically focused on ME/CFS. However, ME/CFS expert clinicians have been using LDN for decades, and feedback from patients has shown that it often helps. My son and I have been taking LDN for 16 years, since 2007.

The real exciting news is that this clinical trial will include 160 people and will be a randomized, placebo-controlled, double-blind study. That's the gold standard in science and medicine and will allow the study results to be published in peer-reviewed medical journals, where it will be widely available to the entire medical community. That would be a game-changer for all patients, allowing us to show any doctor the study and ask for the treatments.

In this short video, Dr. Systrom explains (in layperson's terms) the details of the trial, why they chose these two treatments, what he's seen in patients, and what the impact of the study could be. You can watch the 16-minute video on YouTube or here:

This is the start of a new era for ME/CFS amd long-COVID!

What are your thoughts on this new clinical trial?

Have you tried either of these treatments?

Let me know in the comments below.

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Chronic Illness Vlog: Crash! A Mostly Horizontal Week

My latest chronic illness vlog is now available. I record these vlogs over the course of a full week, to show an honest view of my life with chronic illnesses, including ME/CFS and Lyme disease. Last week (and continuing this week!), I've been struggling with a "mystery crash," a sudden worsening of my symptoms, especially flu-like aches. The aches are an immune sign that tells me my immune system is over-reacting to ... something. You can hear in the vlog as I consider various possibilities throughout the week. My best guess now is that perhaps yeast overgrowth/candida has flared up again, as it did this summer. 

You can watch the video on YouTube or here:

As an update, I did get the stronger antifungals from my doctor and started them yesterday, but I am still achy and horizontal. Fingers crossed I feel better for our Thanksgiving trip next week to visit family. 

Here are some of the topics and treatments I mentioned or referred to in the video (all of these links are also below the video on YouTube).

• ME/CFS and Infectious Triggers -how to prevent and treat worsening during fall/winter.
• Treating Immune Dysfunction - includes information both on improving immune function and on treating underlying infections.
• Inosine - an inexpensive supplement that helps to normalize the immune system.
• Effective Treatments for Yeast Overgrowth/Candida - a common problem in ME/CFS and long-COVID that can make you feel awful.
  
• Diagnosing & Treating Orthostatic Intolerance (OI) blog post
• OI Video
• Chronic Illness Tracking: How I Feel, Symptoms, and Treatments video
  
• Vitamin B12 - what it does, why we need it, plus types and forms that work best
• Increasing Glutathione in ME/CFS and Long-COVID
• Treatments: Tried and True & New Hope - Dr. Davis' very interesting 10-minute video on "Can ME/CFS Be Cured?" plus another article on treatments.

 

How are YOU doing? How was your week?

Let me know in the comments below.

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