ME/CFS Treatments

 

Summary of Effective Treatments for ME/CFS and Long-COVID

Updated on March 15, 2024

(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. I can't count how many times people have told me they were diagnosed with ME/CFS and then the doctor said, "There are no treatments--just go home and deal with it as best you can." 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.

So, here, all in one place, is a list of treatments that have helped my sons and I, a set of guidelines for potential treatments to discuss with your doctor and try for yourself. A couple of important notes first:

1. Everyone is different and different things work for different people--the best approach is to try things and find out for yourself.
2. That being said, don't just try something and give up if it doesn't work at first. With ME/CFS, all treatments require some trial and error to find exactly what will work for you. It may takes many months and many trials to find just the right combination that will be effective for you. So many times, I hear someone say, "Oh, I tried that--it didn't work for me." Then, I find out they tried just one medication or supplement at just one dose - try, try again!
3. In the case of medications and supplements, always start with the lowest possible dose--and then cut it in half! Then, you can gradually work up depending on how it affects you. People with ME/CFS tend to over-react to meds and supplements. If you are one of those people, start your treatments by improving methylation (see below), which is why many with ME/CFS can't tolerate meds and supplements.
   
4. Patience and persistence are the keys to success! Don't Give Up!
5. If nothing seems to work for you, then there are usually underlying infections that need to be diagnosed and treated, and you may not improve at all until you address those (see Diagnose and Treat Underlying infections below).
6. I am not a doctor! These are just the treatments that have worked for us--you should work with your own doctor(s) on your own unique case to find what works for you. Don't have a doctor who understands how to treat ME/CFS? This post on Finding a Doctor for ME/CFS can help. You don't necessarily need an expert--just someone willing to learn more and work with you.

With those guidelines in mind, 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.

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!

Correct Sleep Dysfunction
When I first found my primary care doctor and she diagnosed me with ME/CFS (after a year of living with a mystery illness), she said, "The first thing to do is to fix your sleep--that will improve ALL of your symptoms." She was right! With the characteristic sleep dysfunction of ME/CFS, you don't get the deep stages of sleep that you need to recharge your body and keep it running well. Without good sleep, everything gradually gets worse in an ever-increasing downward spiral. In contrast, when you get solid, refreshing sleep, everything is better and you stop that steady decline. I'm not talking about sedatives to knock you out but medications that actually correct the underlying cause of our sleep dysfunction (endocrine/hormone dysfunction). My son and I have had deep, natural, refreshing sleep almost every night for the past 20+ years. Read more about how this works, the details of our own experiences, and options you can try in this newly updated post, Correcting Sleep Dysfunction in ME/CFS and Long-COVID. I originally wrote this article for the ProHealth website, so it includes scientific references at the bottom and is perfect for sharing with your primary care doctor or GP.


Treat Orthostatic Intolerance
Studies show that over 97% of those with ME/CFS have some form of Orthostatic Intolerance (OI) or dysautonomia, as do about 75% of those with fibromyalgia (and many with EDS, long-COVID, and MS). Other terms under the OI umbrella include POTS (Postural Orthopedic Tachycardia Syndrome), Orthostatic Hypotension, and Neurally Mediated Hypotension (NMH). OI is such an integral part of ME/CFS that it was included in the new diagnostic criteria created by IOM. Basically, OI means that our bodies can't hold a steady blood pressure and/or heart rate when we are upright, especially when we stand but also just sitting up. OI contributes to all of the symptoms of ME/CFS: fatigue, headaches, achiness, pain, sleep dysfunction, exertion intolerance and more. 

The good news is that treating OI often results in dramatic improvement in all symptoms! This post explains what OI is, how it affects us, and some treatment options, including my sons' experiences with Florinef, a treatment that allowed them both to return to school full-time. This post is specifically about using beta blockers to treat OI, a treatment that has dramatically improved life for my older son and I, allowing us both to be much more active without crashing. As I said in the introduction, trial and error is critical here. There are over three dozen different types of beta blockers on the market, available in a wide range of doses--it often requires trying several types at different doses (always starting with the lowest possible) to find the one that is best for you. Beta blockers have been particularly helpful to me in conjunction with using a heart rate monitor. For more information, see my posts on Challenges in Diagnosing OI and Challenges in Treating OI. For sharing with your doctors, print my 2-part article, Diagnosing OI in ME/CFS and Treating OI in ME/CFS.

Treat Methylation
As I explained in the introduction, it may be helpful to start with this step. This is an area of treatment that has definitely helped us both. Methylation is almost always dysfunctional in people with ME/CFS and directly affects GI function, energy production, detoxing, and mitochondrial function. If you are one of the many people with ME/CFS or long-COVID who can not tolerate medications or supplements or who overreacts to tiny doses, this is almost always due to poor methylation. This blog post explains what methylation is, with information on how to treat it.

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. The problem is that there aren't a lot of known ways to do this yet. ME/CFS is a mixed bag of immune dysfunction: parts of our immune systems are over-active and other parts are under-active. So the treatments typically used for autoimmune disease or for immune deficiencies don't usually work for us. We need to avoid both immune boosters and immune suppressors; instead we need to normalize or balance the immune system. 

Three simple and very inexpensive treatments have worked well for my son and I: low-dose naltrexone,  inosine, and glutathione. Together, these three treatments (again, super cheap!) have dramatically improved our symptoms and quality of life. We have very few crashes anymore, and virally-induced crashes have almost disappeared completely. I almost never get sore throats or flu-like aches anymore, unless an infection is present. Glutathione is a naturally occurring compound in the body that is critical for energy production, detox, immune function, and more, and people with ME/CFS just don't make enough of it. This post explains more about glutathione and what it does, with many different ways to increase it (some very inexpensive), including our own experiences with oral (not recommended), injections, and nasal sprays.

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. These cam include old, reactivated viruses lingering in our bodies, tick infections (which often go hand-in-hand with ME/CFS), and reaction to molds and/or fungi, including yeast overgrowth (not technically an infection but our immune systems react as if it is).

Viruses:

It is known that the immune dysfunction of ME/CFS causes old, dormant viruses to reactivate, so it is very, very common for people with ME/CFS to have active viruses in our bloodstreams. 

One example is the Epstein-Barr Virus (EBV), the virus that causes mono (also known as glandular fever). By adulthood, over 95% of the population have been exposed to EBV, whether they had an active case of mono or not; it is a very common infectious agent. In most people, it is dormant and causes no symptoms, but since our immune system over-reacts to viruses, it is often reactivated in us, causing all sorts of problems, including sore throats, swollen glands, flu-like aches, feeling feverish, brain fog, and severe fatigue. 

There are many other viruses that can trigger ME/CFS to start or get reactivated by the immune dysfunction. The good news is that antivirals can help tremendously, sometimes even bringing on full recovery! The tricky part is that antivirals are very specific to the virus (unlike antibiotics), so the first step is getting tested for all sorts of common viruses. Some to look for include herpes-family viruses like HSV, EBV, HHV-6, CMV, and common types of enteroviruses. Then the doctor can choose the antivirals that work against your specific virus(es). Here's a summary of my own experience with antivirals. In my case, I had only low levels of EBV and HHV-6, so my improvement was correspondingly small. Typically, the higher the viral levels, the greater potential for improvement. If you know which infection triggered your ME/CFS to start (for instance, mono), then treating THAT infection can be particularly effective and even bring on full recovery--time is of the essence--the sooner, the better!

If your ME/CFS started with COVID as the trigger (i.e. long-COVID), then there are antivirals available now that are effective against that. Try them, even if your initial COVID infection was some time ago.

Tick Infections:

Another category of infectious agents that you should be evaluated for are tick infections. Lyme disease is a known trigger for ME/CFS, and I have met hundreds of people with ME/CFS who had tick infections behind the scene, including my son and I. He got steadily worse for 5 years before we finally found out that he had Lyme disease plus two other tick infections. He has been improving with treatment for those and just started his first full-time job in his professional field! If you have been tested for Lyme in the past and had a negative result, that means nothing. The tests only catch about 50-60% of Lyme cases and are very prone to false negatives. The only way to know for sure if you have tick infections is to be fully evaluated by a Lyme expert who can also evaluate you for all the other common tick infections (my son got much worse because we knew he had Lyme but not those other two tick infections). 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.

Yeast Overgrowth:

Finally, my son and I have both struggled with chronic yeast overgrowth for decades, and I am always amazed by just how much worse it makes us feel! It's not technically an infection, but our immune system reacts as if it is. Because of the particular type of immune dysfunction in ME/CFS, yeast overgrowth/candida/thrush is very, very common and can go undetected for years, while you gradually get worse and worse. This post explains how to diagnose yeast overgrowth and treatments that have helped us (newly updated in 2024). Untreated, I feel exhausted and achy and can barely get off the couch (even with all these other treatments that have helped me); when the yeast overgrowth is treated and under control, I live a full, active life. The difference shocks me every time!

Treating 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. 

Sex Hormones:

Sex hormones can wreak havoc in ME/CFS, too. When I was younger, I got much, much worse whenever I had my period. My doctor switched me to 90-day low-dose birth control pills, which worked great! They keep my hormone levels steady for 3 months at a time. Then, every 12-14 weeks, I stopped taking them for 5 days, got a period, and then went back on them. So, instead of crashing from my period every 4 weeks (25% of my life!), it was just 5 days out of every 3 months or so or 4 times a year. Much better!

In 2022, my OB/GYN told me she was retiring. Since I was 57, she said I had to be fully in menopause by then (our plan was to keep me on the birth control pills until I was past menopause, to prevent worsening from menopause symptoms). She wanted to see me through the transition before she left (yes, she was wonderful). We both knew it would be rough--after decades of holding my hormone levels perfectly steady--but it was much worse than we'd expected! That sudden shift in hormones left me completely wiped out, all my ME/CFS symptoms worse, and mostly bedridden/couchbound. I waited six weeks for the artificial hormones to clear out of my system, got tested, and I was indeed fully past menopause. Then, she started me on Estradiol patches (estrogen replacement, also known as Hormone Replacement Therapy or HRT), along with progesterone pills. As my hormone levels evened out again, I returned to my previous (pretty good) level of functioning. My new OB/GYN has agreed this is a long-term treatment for me because of my ME/CFS (there are risks, though, so it should be discussed with your doctor. Mine ordered tests first).

Testosterone cream can also be helpful to some, especially men with low testosterone.

Thyroid:

For many, many years, I said that thyroid dysfunction was very common in ME/CFS but that I didn't have it. Boy, was I wrong! After that awful transition off birth control pills at the end of 2022, my thyroid was severely dysfunctional. Hormones are all connected (the endocrine system), so when one is off, it can throw the whole system off. This is another reason why it is so critical to correct sleep dysfunction. 

I was already on a low dose of one medication for hypothyroidism, but it clearly wasn't enough. I spent a full year, working with my primary care physician to normalize my thyroid function--getting lab tests (which ones is critical), adjusting medications, waiting two months to retest, etc. Finally, by the end of 2023, with medications and supplements, my thyroid was functioning well. I'm now feeling the best I have felt in years! 

And, by the way, I lost over 20 pounds just from normalizing my thyroid function (no change in diet at that time), and I am at a healthy weight I haven't seen in 20 years. That tells me that my thyroid was off for a long time. This post explains all about Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID, including which tests to ask for.

Low Cortisol:

Low cortisol all the time is a hallmark of ME/CFS. However, the top ME/CFS experts do NOT usually recommend taking hydrocortisone for low cortisol. The biggest problem is that when you add in artificial cortisone, your body stops producing it on its own. So, you take a patient who is already not making enough cortisol and give them something that makes the situation even worse over the long-term. It is likely to help in the short-term but should not be continued for more than a month or so. 

A better approach is one that has worked well for me. The endocrine system dysfunction that causes low cortisol is closely tied to all the other dysfunctional systems in ME/CFS; it's all interrelated, especially in the endocrine system. So, when you treat and correct other problems, the endocrine system just naturally self-corrects and normalizes. So, instead of treating low cortisol directly, treat immune dysfunction, correct sleep dysfunction (a huge factor in endocrine problems), treat OI, correct methylation, treat thyroid dysfunction, and treat underlying infections. When you do those things, the endocrine system just naturally begins to normalize. This has worked well for me, and when I had my 24-hour cortisol test, it was perfectly normal! It showed the expected higher cortisol in the morning, slowly decreasing during the day to a low point at night. 

This post provides a good roadmap to treating ME/CFS with currently available approaches. It can also help you to find the most critical blog posts I have written on treatment options, instead of wading through 18+ years' of posts!

This just represents our own experiences - please share your own treatment successes in the comments section! What has worked for you?