New Research & Resources on ME/CFS and Long-COVID

I currently have 18 tabs open on my laptop browser, and most of them are new research on ME/CFS, long-COVID, Lyme disease, and related topics that I wanted to save to tell you about! So, I think it's time to pull some of this information together for you and clean up my browser a bit. 

And that's the really good news: there is so much exciting research going on right now, being reported each week! It's hard to keep up with it all, so let me help you with some quick recaps, with links to more information:

Helpful Resources for Patients (and Doctors, too):

Last week, I wrote a whole post about Resources for Educating Doctors about ME/CFS and Long-COVID, so be sure to take a look at that, too. Here are a few additional resources that I've found helpful as a patient:

• Heart Rate Variability from the Bateman Horne Center (led by Dr. Lucinda Bateman, one of the top ME/CFS specialists in the world) - this simple one-page information sheet explains what Heart Rate Variability (HRV) is and how it can help you track how well (or poorly) your autonomic nervous system is functioning. This is another easy way track how you are doing, with hard data, in addition to heart rate and steps taken (see my video and blog posts on Measuring Limits with Heart Rate Monitor and Step Counter). I'd heard that HRV was important but didn't understand it - now I do! I have set up my Apple Watch to track HRV daily, as well as heart rate and steps taken - just another tool to measure when I need to rest and when I am doing OK. Share this with your medical professionals, too!
• Physiology of Post-Exertional Symptom Exacerbation - this video from Dr. Todd Davenport explains the latest scientific findings about why exertion makes us worse and what is going on in the body of someone with ME/CFS or long-COVID when we are active that causes the characteristic crash. Dr. Davenport is one of the top experts in this field, and I had the pleasure of "meeting" him when we were both participants in a set of informative videos about using heart rate monitors in ME/CFS (Part 1 and Part 2), intended for both patients and physical therapists/physios.
  

 

New Research Advances and Updates

• "Blood Tests for Chronic Fatigue Syndrome," an article in Drug Discovery News. This article, which is written in clear layperson language, describes the need for biomarkers and diagnostic testing for ME/CFS, and three of the best possibilities from recent research. You can't go into your local lab to get any of these tests yet, but the progress and the focus of these researchers is encouraging. This is also a great article to share with any doubting doctor (along with the Resources for Education Doctors about ME/CFS and Long-COVID).
• "Circulating MiRNAs Expression in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" - directly related to the article above, microRNAs are one possibility for future biomarkers/tests to diagnose ME/CFS. In this case, the focus was on how miRNA gene expression specifically for activated HHV-6 infections (common in ME/CFS) could differentiate ME/CFS patients and healthy controls. This short abstract describes the findings.
• "Nicotine applied by transdermal patch induced HSV-1 activation and occular shedding in latently infected rabbits" - I wouldn't normally call attention to an animal study but this one was disturbing, eye-opening, and definitely relevant to ME/CFS patients. We are known to have reactivated herpes-family viruses in our bloodstreams; the specific kind of immune dysfunction of ME/CFS and long-COVID causes these old (latent) viruses to reactivate. There has been talk among long-COVID patients on Twitter of using nicotine as a treatment. Given this evidence that it could cause further activation of herpes-family viruses, I would pass on that one (not to mention how addictive it is).
  
• "Convergence: How Gut, Immune, and Metabolic Issues May Be Producing PEM in ME/CFS" - this excellent article, written for patients, is by Cort Johnson, a patient himself and long-time expert in summarizing research for the patient community. It's his layperson summary of a recent research study, "Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in myalgic encephalomyelitis/chronic fatigue syndrome" (see why we need to Cort to translate this for us?). As Cort explains, the ground-breaking aspect of this study was how it brought together immune dysfunction, gut issues, and metabolic dysfunction and connected them all to the hallmark exercise intolerance of ME/CFS (and long-COVID, too). See the right-hand column for a shorter, simpler summary under "The Gist." This is exciting research! I plan to share this with our functional medicine specialist.
• "The Paxlovid Possibility: Antiviral Drug Found Protective Against Long-COVID" - another excellent article from Cort Johnson summarizes a recent study from the Veteran's Administration--of 9000 patients!--showing that using Paxlovid early on in COVID-19 infection reduced incidence of long-COVID by 25%. Cort explains the study's findings and what it might mean for long-COVID and ME/CFS in the future. Again, the sidebar labelled "The Gist" provides a shorter bullet-point summary.

That is some really exciting research on ME/CFS and long-COVID, covering some of the biggest aspects of the diseases! The future is looking brighter (and my browser is cleaned up, too). I hope these brief summaries helped to update you on what is going on in the world of research!