ME/CFS Treatments


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

(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. My son and I have had deep, natural, refreshing sleep almost every night for the past 17+ years. Read more about how this works and the details of our own experiences 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 takes 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 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. It is known that 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, 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 EBV, HHV-6, CMV, and common types of enteroviruses) and 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.

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 diagnosed with ME/CFS who turned out to have tick infections behind the scene, including my own son! 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. 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.

Finally, my son and I have both struggled with yeast "infections" or overgrowth, and I am always amazed by just how much worse it makes us feel! 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. 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!

Treat Methylation
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.

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 17+ years' of posts!

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


Brad said...

Hi Sue, firstly awesome blog and website, one of the best on CFS I have seen, you even mentioned Ros Vallings here in NZ!
Above you said to share what has worked for me, like most there has been no magic pill for me however I have put together a list of my management strategies that work for me here

All the best for your journey

Sue Jackson said...

Thanks for the kind words and for sharing the link.

Picket Fence said...

All autoimmune disease starts in the gut, the actual location of the immune system. Treat the gut and stop the drugs!!!

Unknown said...

Hi, Sue--I just became aware of your blog. I'm beyond impressed. I've had ME/CFS for over 20 years, and through a series of relapses have gotten worse over the years. I just do my best to enjoy each day. After all these years, I still haven't hit upon a drug or, for that matter, any kind of treatment regimen that helps. Currently, the most helpful thing I take is...dark chocolate, if you can believe that! I see Dr. John Chia, but his treatments have not worked. I'm going to try saline infusions next. I still don't have my sleep sorted out.

Sue Jackson said...

Hi and thanks for taking the time to leave a comment - and for the kind words about my blog. Sorry for the delay - I was away for a few days.

So sorry to hear you have gotten worse over the years and that treatments you've tried haven't worked. That almost always means that some sort of infections are behind the scenes. Since you see Dr. Chia, and I know he is well-versed in the viral infections associated with ME/CFS (did he check you for those?) including his own research on enteroviruses, that makes me wonder if you might have tick infections lurking in the shadows - that turned out to be the reason why my own son got worse and worse for a few years until we figured it out (he's doing well now & just graduated from college!)

There are no reliable blood tests for Lyme, due to the nature of the Lyme bacteria (it doesn’t stay in the bloodstream) & the fact that many people – especially those with immune disorders like ME/CFS – don’t make the antibodies. The best blood tests only catch about 65% of cases. So, if you get a positive blood test result, you definitely have Lyme, but a negative blood test result doesn’t tell you anything. In addition, Lyme is only one of a dozen common tick infections, and most doctors only test for Lyme. The only way to know for sure if you have tick infections (including Lyme) is to see a Lyme specialist or LLMD who will run the best tests available but will also look at symptoms, history, and physical exam to determine if tick infections are present and which ones – any single positive test result for ANY of the tick infections means you were definitely bit by an infected tick, then the doctor can figure out which ones based on his or her experience (that’s why you need to see an LLMD). Here’s how to find one near you:

You can also follow the link in this post under Correct Sleep Dysfunction for the treatments that helped us get back to normal, refreshing sleep.

Good luck and please let me know how things are going for you and what you find out!

You can also follow me and communicate with me on Twitter @livewithmecfs or on Facebook:

Nice to "meet" you!


ME_patient said...

I took Cymbalta for about three years to manage FM type pains, but recently had to wean off of it due to a complication that was potentially, but not likely due to Cymbalta. Anyway, I switched to LDN after my wife read about it being affective for some sufferers. It took at least three weeks to kick in, but it manages the pain as well if not a bit better than Cymbalta did.

Sue Jackson said...

That's wonderful news! So glad to hear that LDN is helping you. It's primary purpose is to normalize the immune system, but many people say that it also helps with pain - glad you are one of them!

LDN is just the first step! I encourage you to try some of the other treatments listed on this page, particularly another treatment for immune dysfunction, like inosine or glutathione, and treating OI, which can bring dramatic improvements.

Perhaps most importantly, since pain is a primary symptom for you, you should see a Lyme specialist to get evaluated for all the common tick infections - they are a common source of pain for those with ME/CFS and fibro. You have to see a specialist because the blood tests are not reliable.

This post explains more about why you should get evaluated for tick infections, why blood tests are unreliable, and how to find a Lyme specialist near you. The urgency is that when the4se infections are left untreated, they can cause arthritis and permanent neurological damage - so better to at least rule them out:

Hope your improvement on LDN continues!


davidgraham said...

This disease has destroyed my life like it does for all with it :(

Sue Jackson said...

That's not true for all, David. Have you tried any of the treatments outlined on this page? One treatment at a time, we have greatly improved our lives so that we can be active again!

You can, too - I encourage you to work your way through this page, one treatment at a time - it takes a lot of patience and persistence to find exactly what works best for you, but it is well worth the effort!

That's the purpose of this blog - to help those with ME/CFS improve their lives, both physically and emotionally.



Unknown said...

Love your blog. Looking for a llmd for my 19 year old son. Can you tell me who your son sees?

Sue Jackson said...

Thanks! I'm glad you're finding it helpful :)

You don't mention where you live, but you can find an LLMD pretty much anywhere. Use the resources in this article to help find an LLMD near you:

Some of these require registering with a username and password, but I think they are all free.

Good luck and let me know if you have any other questions!


Anonymous said...

Hi Sue. I have been using cymbalta and dhea which worked for over 20 years for me. Unfortunately seem to be less effective now. Do you know about this routine.
I am in Australia and doctors don't know about cfs.

Sue Jackson said...

No, not familiar with those for ME/CFS. Cymbalta is used to treat depression & anxiety & sometimes for nerve pain. Be cautious with the DHEA. It is a sex hormone and too much of it can have serious side effects, including tumors. My son's DHEA just came back high in a test (for unknown reasons), and his doctor was very concerned about it (luckily, ultrasound showed no tumors). So, I would have your doctor test your DHEA to make sure it's not too high after all those years of supplementing.

Click on the Treatments tab in this blog for information on tested, effective treatments for ME/CFS - most do not require a specialist.

And also check the Find a Doctor tab - there are some ME/CFS specialists in Australia.

Good luck -


Unknown said...

Quick summary - I’ve had CFS for three years after a bout with mono. Nothing has helped me, and doctors dismiss me. I have been getting allergy shots, but after reading your comments on the harm they may be doing, I’m going to stop immediately. My question is: how do you get LDN? I would like to try this as soon as possible. I have been crashing every day for over two weeks, and I need help.

Sue Jackson said...

If you KNOW your ME/CFS started with mono, then you have a unique opportunity to treat the known trigger. Mono is caused by the Epstein-Barr virus (EBV) and can be treated with a number of anti-virals that are specific to EBV and other herpes-family viruses. Read the part of this post about treating underlying infections. Here is a link to an article about Dr. Martin Lerner who pioneered the use of antivirals in ME/CFS in people just like you:

Toward the bottom of that is a list of his published studies - that should help in convincing your doctor. He usually started patients on Valtrex, an antiviral that works very well against EBV. I suggest you follow up on this with your doctor immediately because you are at a critical point - most full recoveries occur in the first three years or so. You can also look up Dr. Jose Montoya's work on treating ME/CFS with antivirals.

As for LDN, you do need a doctor's prescription - even though it is tiny amounts here, naltrexone is still a prescription drug. Since naltrexone is only manufactured in 50 mg pills (and up), you need to take that prescription to a compounding pharmacy, so they can make it up special for you. Click the link in this post about LDN and it will take you to another detailed post, all about LDN and how to get it.

Once you get those 2 treatments, I would put treating OI and further treating immune dysfunction next on your list - those have had the greatest impact for us.

Good luck - let me know how it goes!


Sue Jackson said...

P.S. Re: your current crash - it is VERY important to rest as much as possible, avoid being upright (because of OI), and to avoid even mild exertion. Listening to your body is critical and the more you try to fight the crash or push through it, the worse you will get. Just a tip, in case you didn't know that yet. It can be hard to rest as much as you need to! I've been in a bad relapse for the past month or so myself, so mostly lying on the couch or in bed.

Sue Jackson said...

P.P.S. As for allergy shots, the way they work is to stimulate your immune system with a tiny bit of what you're allergic to and hopefully over time, make you less sensitive to that. But parts of the immune system in ME/CFS are already over-stimulated (particularly the parts that respond to allergens), so yes, it is possible they could backfire for us ... though I know some people do use them.

What you might want to consider instead is treating MCAS (mostly OTC stuff) - most of us have it due to that over-active part of our immune systems - and it can help:

Anonymous said...

Thank you so much for your immediate and thorough response - I feel like you’ve thrown me a lifeline, and you’re the first person to do so. Now I need to convince my doctor, and this is what worries me. I hope he will listen!

Sue Jackson said...

Happy to help! Let me know how things go for you.


Lucy said...

Brilliant list of tips and treatment strategies Sue, thank you. I agree, everyone is unique and half the battle is finding what works for you. With so many people promoting a quick miracle cure it's so important what you said to be patient and give things time. Sleep is so crucial and has the biggest impact on how I feel each day so putting together an evening routine to sleep better really helps me. Addressing underlying infections is something I'm focussing on at the moment and it's already making a huge difference. Thanks again for such a great post. I hope you're well. Lucy

Sue Jackson said...

Thanks, Lucy! Yes, it's important to understand there are no miracle cures with ME/CFS. For us, many treatments only helped a little bit, but those little bits added up to big improvements over time. I agree about sleep! Good luck with treating underlying infections - that's another important step - hope you continue to improve!


Anonymous said...

Have same Lyme/ long civ/ gut dysbiosos, etc 🙏❤️

Sue Jackson said...

Sorry to hear that! I hope you've also found some treatments that help -