Dr Gary Kaplan explains the latest developments in the understanding and treatment of CFS (ME) to Kindred Spirit
What is the significance of the new name change?
The Institute of Medicine (IOM) in the United States proposed Systemic Exertion Intolerance Disease (SEID) as the new name for ME/CFS in their consensus report published in February 2015. The IOM proposed the name change because of concerns around the current stigma associated with the term ‘Chronic Fatigue Syndrome,’ and because of the subsequent failure by a large segment of the medical community to acknowledge that people suffering with this condition are dealing with a real disease.
So, it could be said the goal of the name change was to convince the medical community to look at this disease with fresh, unbiased eyes. ‘Systemic’ acknowledges that this is a disease that affects multiple body systems and ‘exertion intolerance’ names what the IOM is defining as the central feature of the disease. The IOM has stated unequivocally that SEID is a distinct disease, that people suffering with this disease need to be taken seriously, and that research efforts need to be supported to find a cure. However, the name is at odds with what the rest of the world calls this disease and still defines it by its symptoms rather than its underlying pathophysiology.
Which is the more accurate definition – The World Health Organization regarding SEID as a neurologic disease or ICC regarding it as an immunological mediated neuroinflammatory disease with multi-system manifestations?
The objection to the name Myalgic Encephalomyelitis by the IOM centered on the fact that not everyone with SEID suffers with muscle pain. The most recent evidence points to an underlying problem with the functioning of the immune system with neurologic involvement. Even though the World Health Organization (WHO) classifies this as a neurologic disease, in reality it’s neither fish nor fowl, because it impacts multiple body systems – neurologic, cardiovascular, immunologic, gastrointestinal, musculoskeletal, sleep – and therefore does not neatly fit into one specialty. The research supports that there is an inflammatory process in the brain, instigated and maintained by the immune system, and that this neuroinflammation can account for the majority of symptoms of the disease, but there is also clearly an inflammatory process occurring throughout the body.
While not ideal, the name Myalgic Encephalomyelitis comes closest to focusing on the pathophysiology though only about 60% of the patients will have significant muscle pain as part of their presentation. ME also has the blessing of an international community of experts who are involved in the research and treatment of this disease.
Which parts of the report do you agree with wholeheartedly (this is a medical not psychiatric condition) and what do you disagree with?
I applaud the IOM for stating unequivocally that this is a serious medical disease with devastating consequences for many of its victims. I also wholeheartedly agree with the call for a serious commitment of research efforts and funds to find a cure.
My biggest concern has to do with the 6-month waiting period before the diagnosis can be made. The ICC does not require a 6-month period, and the delay subjects patients to unnecessary suffering, while also denying researchers access to study patients in the earliest stages of this disease. This is especially burdensome in the pediatric population where 6 months of an 11 year old’s life is an eternity for the child and parents.
Can you tell us a little about your research and work treating the root cause of SEID?
ME/CFS/SEID is a complex disease that requires a comprehensive and individualised approach to care. I regard this disease to be a consequence of an underlying systemically, immunologically mediated neuroinflammatory disease meaning that the immune system has been triggered in some way, and has caused inflammation in the brain and also throughout the body. This inflammation in turn causes fatigue, brain fog, sleep disorders, dysregulation of the cardiovascular system, muscular pain, and gastrointestinal disturbances.
From my research and clinical experience, I believe that the development of ME (SEID) is a consequence of genetic susceptibility combined with multiple unresolved assaults on the body. Treatment of this disease requires that we look for all potential causative factors still present in the body, such as toxins and infections, and eliminate them. We also need to find a way to help quiet and reset the immune system itself because once the immune system has been ‘turned on’ too many times, it can remain in this hyper-reactive state and continue to produce inflammatory factors even when the initial triggers are gone.
A number of medications and supplements have been found effective in quieting the immune system and the inflammation in the brain. A low inflammatory diet is ideal. Meditation is also highly effective in helping the brain to repair, as is exercise, though for people suffering with ME, exercise can exacerbate their condition requiring their activity levels to be regulated carefully so as to not worsen their disease.
I cannot emphasize enough, however, that treatment needs to be both individualised and comprehensive. While we have been able to help a number of people, there is still much we have to learn about this disease and far too often solutions are elusive. The good news is that with the recent reports from the IOM and NIH (National Institute of Health), this disease is starting to get the attention it deserves from the research and medical community. I believe that, with the advent of new diagnostics and treatment approaches, a cure for ME is within reach, provided that we can devote the resources necessary to conduct sufficient research and clinical studies.
About the author: Dr. Gary Kaplan, D.O.,is a pioneer of integrative medicine. A clinical associate professor at Georgetown University and director of the Kaplan Center for Integrative Medicine, he has also served as a consultant to the NIH and, in October 2013, was appointed to the Chronic Fatigue Syndrome Advisory Committee at Health and Human Services.