My browser has about twelve open tabs currently, and eight of them are "new" research studies on ME/CFS. They have been sitting open and cluttering up my laptop's browser for a long time (some a
very long time!) because I wanted to be sure to both read (or at least scan) them myself and share them here with other patients.
The good news is that there is a
lot of medical and scientific research happening in the ME/CFS world, and it is in a wide variety of different aspects of the disease: exercise intolerance, immune dysfunction, and more. Such a wealth of growing knowledge means that experts are slowly but surely learning more about what is behind our very complex disease ... which means that advances in diagnosis and treatment will be following.
There is a lot here, so I will stick to some brief summaries and links to more information:
Immune System Dysfunction
Mast Cell Neural Interactions in Health and Disease
This paper from last year provides a summary of mast cell interaction with the nervous system through various means. It is a review article, which means that its authors didn't do any new research themselves but instead wrote this paper to pull together the findings of many different studies. This type of review article is very helpful, as it takes lots of different studies and summarizes all their findings together, providing an overall picture of one aspect of a disease process. If you are not familiar with
Mast Cell Activation Syndrome (MCAS), take a look at this earlier blog post where I explain what it is and provide treatment tips (often inexpensive, over-the-counter meds) and links to more information. MCAS is a part of the immune dysfunction in many patients with ME/CFS, and treating it can sometimes bring dramatic improvements.
ME/CFS as a Hyper-Regulated Immune System Driven by an Interplay Between Regulatory T Cells and Chronic Human Herpesvirus Infections
This study from the UK, published at the end of 2019, builds on the well-known theory that ME/CFS occurs when a triggering infection (often a very common virus) causes immune system dysfunction in those who are prone to it (other studies show this is probably a genetic predisposition). This team focused in on just a few of the common herpesviruses (HHV-6, HV-1, EBV) and on the response of the body's CD4+ T cells, a component of the immune system. They developed a mathematical model that could potentially mirror what is happening in the immune system of someone with ME/CFS. While this study is somewhat limited--we already know that a wide variety of infectious agents in addition to those three can trigger ME/CFS to start--it provides a start for scientists to better understand what is happening in the dysfunctional immune systems of ME/CFS patients. And the better they understand our disease, the closer we will get to treatments or even a cure.
ME/CFS Patients Exhibit Altered T Cell Metabolism and Cytokine Associations
Like the last paper mentioned just above, this one focuses in on the details of the immune system dysfunction, which is central to ME/CFS. This was a single study, measuring different types of cells that are a part of the immune system and their responses in ME/CFS patients, including CD4+ (also examined in the previous study) and CD8+ cells
. The details are a bit complicated, but again, this study is another step in the direction of better understanding the immune dysfunction that is at the heart of our disease. This blog post provides a
simplified explanation of immune system dysfunction in ME/CFS - it is important to understand just the basics so that you can
treat immune dysfunction and help to normalize your immune system, which will help
all symptoms.
Exercise Intolerance and Orthostatic Intolerance
Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in ME/CFS
This paper from the University of the Pacific, which has done outstanding work on exercise intolerance in ME/CFS for decades, is another review article, where the authors examine and summarize the findings of many different studies of exercise intolerance in ME/CFS. Through this process, they identified a new factor to our Post-Exertional Malaise (PEM aka exercise intolerance): chronotropic intolerance, "an inability to appropriately increase cardiac output because of smaller than expected increases in heart rate" during exercise. They came to this conclusion by noting differences between ME/CFS patients during standard 2-day exercise testing (CPET) compared to normal controls and even to cardiac patients. They also concluded that because of this, exercise tests that are supposed to be "sub-maximal" (i.e. not up to maximum effort) are probably well over maximal for those with ME/CFS. If you do not yet know about orthostatic intolerance (OI) and how it affects ME/CFS and exercise intolerance (and how to treat it!),
check out this blog post on OI. Treating OI often helps to improve all ME/CFS symptoms, sometimes dramatically, and can allow you to be active again without crashing afterward.
This post provides more information on how to use a heart rate monitor to help prevent crashes (which will be easier to do
after treating OI). The findings of this study fit with what I wrote in those two blogs posts - people with ME/CFS have a lower-than-normal anaerobic threshold (AT), and standard formulas for calculating AT are likely to be inaccurate for us (adjustments are included in the post).
Norwegian 2-Day ME/CFS Exercise Study Adds Crucial Factor to Exercise Intolerance Findings
Unlike the other research links shared here, this one is not to an original research paper (which are written for scientists) but to an excellent summary, written by Cort Johnson, ME/CFS patient, advocate, and writer. Cort has a real talent for taking complex subjects and explaining them clearly for us laypeople. Here, a recent 2-day exercise test (the gold standard for showing PEM) had a new finding add to the growing body of information on exercise intolerance: in ME/CFS patients, our levels of lactate production immediately increase as soon as we start to exercise. This is yet another piece of evidence that people with ME/CFS switch from aerobic (with oxygen) to anaerobic energy production very quickly. This is not a new conclusion but adding yet another measurable data point can help future studies to learn even more about why even mild exertion makes us "crash."
Energy Production
The Role of Mitochondria in ME/CFS
This is a clear explanation, thanks to the ME Association in the UK, of what the mitochondria do in the body (create energy) and how they are dysfunctional in ME/CFS. It is meant for patients and others to better understand what is happening in our bodies and what research has told us so far about the nature of ME/CFS. There is nothing really new here, but it provides a nice summary, all in one place, of a lot of interesting research results and how energy production works.
Whew, that cleans up my browser quite a bit! But more importantly, all this new research is growing proof that scientists and doctors are learning more about our disease every day. I find the number of research studies in the past few years truly encouraging; it gives me hope for a better future for all of us.
