Newsletter #1: New Concepts for Chronic Fatigue Syndrome

Metabolic Features of Chronic Fatigue Syndrome

For the full text of our paper, click here:

On August 31st, 2016, our research paper was finally published which represents, we believe, a major breakthrough in the understanding and treatment possibilities for Chronic Fatigue Syndrome. Since the paper is, by definition, highly technical, I would like to simplify these findings and make them as accessible to both consumers and medical practitioners as possible.
While the title of our paper: “Metabolic features of chronic fatigue syndrome” might not initially seem exciting, I hope that you will soon come to understand that it is.

At first glance, this would seem to be a straight-forward, simple study. We took 23 men and 22 women with the clear diagnosis of Chronic FatigueSyndrome (CFS) and compared their blood and urine samples with an equalnumber of age- and sex-matched healthy controls. What makes this study unique, is that we used Dr. Robert Naviaux’s Metabolomic Laboratory at
the University of California San Diego medical school which has developed the ability to measure over 600 chemicals in the blood (compare that to the maximum of 24 measurements in an ordinary Complete Metabolic Profile which is what most patients receive routinely) in a single blood draw. Many of the chemicals measured here are not usually tested, and were especially selected to be ones that we thought might be altered in patients with CFS. We also went to great lengths to eliminate patients with CFS who had Lyme disease (which we felt might complicate our results) and to focus on those patients who met every criteria currently in place to define patients who can be diagnosed with CFS.

What did we learn?
First, we were able to distinguish patients with CFS from controls with an accuracy of 94% in males and 96% in females using only 8 metabolites in males and 13 in females. What this means, is that thispreliminary study suggests that we may at last have a test which can actually diagnose CFS accurately! For years, many health authorities have held to the concept that CFS was primarily a psychological illness: here we can show that this is not true! Clearly, measureable biochemical abnormalities are present in the blood of CFS patients that are not seen in controls, and hopefully we can lay to rest the outmoded concept that this illness is “psychosomatic” and get to work on using what we have learned to both diagnose and treat CFS with more precision.
Second, we have learned that there are major differences in the biochemistry of males and females with CFS. The amusing description that “men are from Mars, women are from Venus” may not be that far off. While there were a few overlapping biochemical abnormalities between men and women studied, there were important differences. This underscores our appreciation that all future studies must include equal numbers of men and women so that we do not make the assumption that humans are all “basically the same, biochemically.” Not so. Third, of equal importance, is our discovery that only 25% of these biochemical abnormalities were common to every patient. The majority of imbalances (75%) were unique to each patient. This confirms what we have observed for many years: there is no single evaluation or treatment program that will work for all patients. Each patient is unique and must be studiedwith fresh eyes so that we can understand the particular imbalances that have created CFS in that individual. Fourth, (we can discuss this in more detail at another time) are the details of which specific biochemical imbalances are common to both men and women with CFS: These are the widespread decrease of sphingolipids, phospholipids and glycosphingolipids. You may not be familiar with these substances, but they probably represent an adaptive response by the body to limit the spread of infections. To understand this better, in my next newsletter we will discuss Dr. Naviaux’s Cell Danger Response model which gives us a basis to put all of this in perspective from both a diagnostic and therapeutic platform.

Future implications for this study:
1. For Diagnosis: This testing procedure developed by Dr. Naviaux is only available for research purposes currently. It is hoped that it will be clinically available in a few years. I realize that this is disappointing for the millions of patients suffering with CFS who are need of a test, right now, to confirm their illness and help toorchestrate their treatment. All I can ask is that you continue to be patient and realize that there is still hope for you, hopefully soon.

2. For Treatment: One of Dr. Naviaux’s major concepts is that of the importance of purinergic receptors. The best known purinergic material is ATP—–the substance that is responsible for the generation of energy in the body. While ATP is critical for energy usage and reserves, what is newly understood is that when the body gets sick, it becomes an important signaling molecule as well. It signals DANGER! to the whole body and what we are learning is that until we turn that signal off (think of the loud burglar alarms you have heard) the body is stuck in the perception that it is a state of preparation for possible disaster and STAYS IN THAT STATE UNTIL THE ALARM IS TURNED OFF. We are now beginning to understand that all chronic illness, and CFS in particular, is exactly this: the body is stuck in a state of inflammatory response and it doesn’t know how to turn off the alarm. Our evolving treatment of CFS (and other chronic illnesses)
will need to recognize this vital process. Dr. Naviaux has discovered that there are a number of treatment options which re-boot these purinergic receptors, most notably the medication Suramin. He has proven in animal models (and will be publishing this Spring a clinical trial in autistic children) that we can potentially REVERSE the entire illness process by blocking these receptors. I will hope to provide more details about this research as soon as it has been published.

I am honored and thrilled to be a part of this research. Working with Dr. Naviaux’s laboratory in San Diego and with the patients at Gordon Medical Associates we have added a new dimension to the understanding of CFS. We are planning a clinical trial with CFS patients to begin shortly and a second study of CFS patients, (larger than ours), is 2/3 completed and I hope to be able to share the results of that research soon. Despite the technical nature of this work, I hope I have been able to clarify the most important take-away points. Most important: for those of you who have been suffering for a very long time, there is still hope!