Friday, June 21, 2024

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:

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 DysfunctionME/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.

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Jasper said...

The Stanford Paxlovid trial for Long Covid has failed AFAIK. But there are other trials ongoing

Sue Jackson said...

Yes, I saw that too, Jasper. I'm watching the on-going trials with interest. Based on lots of past experience and study results with other infections, it's well-understood that treating whatever infection triggered ME/CFS to start often brings improvement - sometimes even recovery if it's early enough. Plus, patients with long-COVID have anecdotally reported that Paxlovid helped them. It makes sense - hopefully, the research will catch up so that it is more available to more patients to try.