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!

Movie Monday: Hit Man

In our hotel in Virginia this weekend (we were there for a wedding the next day), we only had access to Netflix and aren't currently watching any TV shows on it, so we chose a new movie I'd heard about: Hit Man. This fun, twisty thriller/rom-com turned out to be very entertaining!

Glen Powell stars as Gary Johnson, a classic mild-mannered professor who lives alone with his two cats, Id and Ego. He teaches philosophy at the University of New Orleans. As a hobby, he has a talent for electronics, so he works part-time for the NOPD, helping them with electronic surveillance. Undercover cop Jasper, played by Austin Amelio, pretends to be a hit man, someone tries to hire him, the police get him on audio (and often, video) with Gary's help, and they arrest the person. One day, Jasper gets suspended from the force just before one of these fake hit man appointments is to occur, and Detective Claudette, played by Retta, asks Gary to come out of the surveillance van and instead take Jasper's place and pretend to be the killer-for-hire. It turns out that quiet, introverted Gary does a great job in the role, and he becomes the new fake hit man for future sting operations. Gary, teaching philosophy to uninterested undergrads in his day job, gets really into making up a different persona to fit each new prospective "client," based on what he thinks they'll expect. He uses wigs, facial hair, different clothes, and even fake teeth, and fully inhabits the character he's pretending to be. His arrest rate speaks for itself. Then, a beautiful woman named Madison, played by Adria Arjona, tries to hire him to kill her husband. It's clear he's been controlling and abusive and Madison is scared, so Gary goes off-script. Instead of letting her clearly state that she wants to pay him to kill her husband (thus ensuring a conviction), Gary talks her out of it and convinces her to run away from him instead. His team is not happy with the outcome. When he met Madison, Gary was pretending to be Ron, an ultra-cool, handsome guy. They meet up again and are very attracted to each other. Though Gary knows it's wrong, he really likes Madison, and they begin seeing each other. Besides, he kind of likes being Ron. How can this relationship end well, when it's based on a lie? And how long can Gary keep his colleagues from finding out?

Crazy as it sounds, this movie is based on a real-life man named Gary Johnson who helped Houston police convict many people of hiring a contract killer over more than a decade. Of course, writer and director Richard Linklater (of Boyhood and the Before trilogy) gave the underlying story the Hollywood treatment here, with a lot of laughs, a hot romance, and some unexpected twists that didn't happen in real life. It's an intriguing premise for a movie, and Glen Powell is outstanding in the leading role, somehow easily transforming from nerdy teacher to slick criminal with dozens of different personas. This movie is filled with humor, from Gary's many disguises to his wide range of clients (including a teen boy who wants to pay him in video games--really happened!) to the sting operations. It's also very sexy, with Gary fully coming into his own as Ron, with Madison's help. But there is also plenty of suspense and lots of surprising twists, especially after Gary and Madison get involved and are in danger of being found out. It was highly entertaining, and we thoroughly enjoyed it. Lots of fun!

Hit Man is a Netflix original movie and is currently available there.

TV Tuesday: Dark Matter

I absolutely love when a book I enjoyed is adapted into a TV show or movie, so I was incredibly excited to hear that Dark Matter by Blake Crouch (my review at the link) was going to air on Apple TV. This is one of my all-time favorite books, a twisty sci fi thriller, and so far, the TV adaptation, Dark Matter, is living up to its source material.

Jason Desson, played by Joel Edgerton, is happily married to Daniela, played by Jennifer Connelly, and they both adore their teen son, Charlie, played by Oakes Fegley. They live in Chicago, and Jason works as a physics professor at a small, local college. Daniela had dreams of being a professional artist, but she now works to help support their family. In the first episode, Daniela encourages Jason to go to a party at a local bar, honoring his best friend, Ryan (played by Jimmi Simpson), who just won a prestigious science award. From their conversation at the party, it's clear that Jason is just as talented but chose the path he did to support his family more reliably. Ryan asks Jason to join him in a new venture, but it would require moving to California, and Jason turns him down. Walking home, Jason is brooding over the path not taken when he is suddenly grabbed on the street and kidnapped. He's taken to a deserted warehouse by his masked captor and injected with something. The next thing he knows, he's waking up in a place he doesn't recognize, surrounded by people he doesn't know but that know him. They say he's been gone for over a year, and they're glad to see him. Jason finds out that this place has the technology to travel to parallel universes, a concept he understands because he himself did the initial research years ago, before he got married. He realizes that he is somehow in one of those parallel worlds, and he is desperate to get back to his wife and son ... but how?

As with the book, this TV show is based on a mind-blowing concept, that there are infinite worlds and that with every choice made or change in events, another variation splinters off. This isn't fantasy but science fiction, based on quantum mechanics (don't worry--it's all beyond my understanding, too!). Crouch put this fascinating concept to good use in this twisty, gripping, and thought-provoking thriller. My husband and I both loved this fabulous novel, and the TV show hews very closely to the book (much to our delight), probably due to the author being the one who created the show and did much of its writing to adapt it. Blake Crouch is adept at that, having written other TV shows, including Wayward Pines and Good Behavior (also based on his own novels). So, the writing is sharp and engaging. The actors all do a great job here, each portraying the same character in many different worlds, each one the same person but slightly different. And that plot! It's unique, suspenseful, and full of surprises. The cinematography is also outstanding for the small screen, as Jason visits Chicago in world after world (some of them apocalyptic). It's just an all-around outstanding TV show. Apple TV really seems to excel at science fiction shows (like their adaptation of Silo by Hugh Howey, coming back soon for season 2, and For All Mankind, an alternative history of the space program). We are loving this one and look forward to a new episode every week!

Dark Matter is currently airing on Apple TV. We've seen six of the nine episodes and will be watching #7 tonight. I can't wait!

I practically squealed in delight watching this trailer again:

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:

<iframe width="560" height="315" src="https://www.youtube.com/embed/tH2QFoTvSgo?si=U_nBUvBRlQnzBRBb" title="YouTube video player" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen></iframe> 

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.