The New York Times featured an article on July 7, 2016 about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) published on June 23, 2016.1 The Times heralds that this article “proves” that ME/CFS is not a psychological illness as it has long been scornfully conceptualized by doctors and the medical world. This is a good thing, I suppose…because it once again emphasizes that ME/CFS is a biological condition and once again emphasizes that infectious agents cause ME/CFS.
Unfortunately, it takes the medical care of ME/CFS in the wrong direction. The cited article by Giloteaux and colleagues, Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome, seems to ignore the extensive research demonstrating a viral etiology for ME/CFS.
The relatively small study examined the stool of 48 patients with ME/CFS for types and diversity of bacteria from the gut. Their findings – reduced diversity, increased numbers of certain species of bacteria that tend to be “pro-inflammatory,” and decreased numbers of bacterial species that are thought to be “anti-inflammatory,” along with multiple inflammatory markers. These findings hardly constitute an etiological explanation. Although the authors are careful to state that gut microbiome disruption may have a role in ME/CFS, the implication is clear – we need to fix that microbiome!
Their article leads off with descriptions of clinical improvement with probiotic therapy or rectal infusions of bacteria-laden fecal transplants. Similarly, they conclude that their findings “highlight the association of specific bacterial taxa with ME/CFS…” There is not one reference to the extensive research literature on the viral etiology of ME/CFS, or to the Institute of Medicine’s definitive review of ME/CFS, which included a conclusion that ME/CFS is likely caused by a virus.2
Perhaps I am being dogmatic, but let me explain why this is a disservice to patients. I have been treating patients with ME/CFS for years. I have heard many stories of the way medical professionals have treated them: 1) Dismissal and scorn – “I feel tired too sometimes, dear,” “Well, you would feel so much better if you just exercised;” 2) Quackery – neurofeedback, rife machines, years upon years of “anti-inflammatory” therapy; 3) Ignoring – complaints of fatigue, mental fog, joint pain go unaddressed for years; and, 4) Psychiatric labeling – diagnosing depression.
In contrast, hundreds of patients in my care have seen improvement in 1-5 months on antiviral therapy. The Institute of Medicine committee reviewed all of the literature and spent months in deliberation before publishing their conclusions.2 High on their list of findings about ME/CFS is that it likely has a viral etiology and the strongest candidate is Epstein-Barr virus (EBV), also known as Herpes 4.
Anything that takes the public eye or the medical community’s effort away from treating ME/CFS as a viral illness is a disservice. Whether you look at the hundreds upon hundreds of patients treated by the late Dr A. Martin Lerner3, or the hundreds of my patients who have resumed normal lives after anti-viral treatment4,5, it is hard to not feel the bile rise. Perhaps seeing it from a patient’s perspective would be helpful.
Cathy had been fatigued for years. She had to stop work as a physical therapist and barely managed to care for her children. She napped 2-3 hours every day. She could not find the energy to play with her children. And often, she was overwhelmed with anxiety. Notably, her daughter also was unusually tired for an 8 year old. Cathy came to me for help with her “depression.” She had been treated for years with antidepressants because her prior psychiatrist has said she was depressed; however, after years on antidepressants, she felt no different.
Curiously, when I interviewed her, she denied feelings of low mood, guilt, suicidal ideation, or other hallmarks of depression. She said she was tired all the time. She did not do the things she liked to do simply because she was too tired. It was not anhedonia – it was fatigue. I ran viral labs and they were extremely high. So I started her on valacyclovir, an antiviral that targets all the Herpes family virus, including EBV and Human Herpes 6 virus.
Within 2 months, she had more energy and was no longer napping daily. By 3 months, she no longer felt anxious. She was active, enthusiastic, and decided to go back to work part-time. By 5 months, we weaned her off her antidepressants and she was essentially symptom-free. And by the way, her bowels were fine too.
Not to paint too rosy of a picture, her daughter was not so fortunate. Her situation was different. She was always tired, often irritable, consumed at times by “stabbing thoughts” (thoughts of stabbing herself with a knife although she had no desire to die), and often anxious. We treated her with antidepressants to no avail. Alas, she also did not respond to 5 months of antiviral therapy either.
At this point, I ran labs to look for Lymes disease and Lyme-related infections. She had very high antibody titers for Babesia and for borrelia burgdorferi. In the hands of an expert on Lyme’s disease, she is making progress; however, her improvement is hampered by abnormalities in her immune system. Only now, with the addition of intravenous immunoglobulins (IV Ig), is she showing marked improvement in her anxiety, mood, “stabbing thoughts,” and fatigue. Unfortunately, IV Ig is very expensive and the insurance company, Blue Cross/Blue Shield, refuses to pay for it.
The family has created a GoFundMe page to try to raise the necessary money for the IV Ig (roughly $75,000 for the full course of treatment).
This little girl’s case illustrates an important point. Fatigue is a vague symptom. And, like pain, it is quite subjective. So the causes of fatigue extend far beyond one virus or one bacterium. Indeed, the causes can include thyroid abnormalities, electrolyte imbalances, cancer, blood dyscrasias, vitamin deficiencies, and infections (to name just a few).
Among these infections, we need to include viruses (particularly the Herpes viruses), retroviruses, Lymes disease and Lyme-related infections. And we need to be open to multiple etiologies for ME/CFS. In other words, when the immune system is compromised by one infectious agent, it can become vulnerable to other infectious agents. My concern is the claims of this study by Giloteaux and colleagues, and the way those claims are exaggerated by the press, will inappropriately focus attention on gut flora in ME/CFS, leaving other causes of fatigue (as illustrated in these two cases) languishing.
Moreover, the Giloteaux article puts undue causal value on the gut bacteria for the symptoms of ME/CFS. What they label as a precipitant may, in fact, be a consequence. Let me explain… Some studies have shown Human Herpes 6 and Epstein-Barr virus can impair the function of the human immune system. If one or both of these viruses indeed cause ME/CFS, and they invade the entire body, including the gut, then they could also disrupt the immune function of the gut. So, conceivably, the viral infection created a favorable environment for the pro-inflammatory bacteria. As a result, all of the disruption in the microbiome could stem from the underlying viral infection.
In conclusion, we appear to be entering the type of shake-up in the field that Thomas Kuhn referred to as a “paradigm shift.”5 All of the elements are there. A well-established concept about a phenomenon fails to account for a growing number of non-conforming bits of evidence. The examination of the bits of evidence reveals a new theoretical model that better explains the phenomenon.
Lastly, the resistance by the established community (in this case the medical community) to give up the old paradigm generates attacks on those who promulgate the new theoretical model, dismissal of the evidence that does not fit the old paradigm, and dogmatic rigidity. Only with great effort is the new paradigm recognized and accepted as correct. We shall see…
- Giloteaux L, Goodrich JK, Walters WA, Levine SM, Ley RE, Hanson MR. Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome. Microbiome. 2016;4(1):30.
- Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Mil Med. 2015;180(7):721-723.
- CFS Publications by A. Martin Lerner. Available at: http://www.treatmentcenterforcfs.com/cfs_publications/index.html Accessed July 8, 2016.
- Henderson TA. Valacyclovir treatment of chronic fatigue in adolescents. Adv Mind Body Med. 2014 Winter;28(1):4-14.
- Kuhn, T. The Structure of Scientific Revolutions. University of Chicago Press, Chicago IL, Second Edition, 1970.
This article originally appeared on Psychiatry Advisor