July 13, 2017
By: Janie Jacoby
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) affects millions of Americans and has devastating symptoms. However, it is poorly understood, and effective treatments have not been established. Despite this, there is good news on the horizon. Research is elucidating several of the underlying pathologies, including dysfunctions of the mitochondria, the intestinal barrier, the gut microbiome, and the immune system. Based on this research, it is clear that ME/CFS is a complex disease that requires a multifaceted treatment approach, and there are a variety of nutrition interventions that may be useful for improving care.
What is ME/CFS?
ME/CFS is found in all ages and demographics. It affects many systems of the body and has a wide range of symptoms. It is commonly triggered by a bacterial, viral, or parasitic infection. Other possible triggers include chemical exposure, physical trauma, and psychological trauma, although sometimes there is no apparent trigger.
According to the Canadian Consensus Criteria, a diagnosis can be made based on four primary symptoms:
- Debilitating fatigue that is not explained by other factors, and lasts for at least six months.
- Post-exertional malaise and fatigue after any type of exertion, whether mental or physical.
- Sleep dysfunction, unrefreshing sleep.
- Pain such as muscle pain, joint pain, and headaches,
as well as:
- Cognitive/neurological dysfunction
- Autonomic nervous system dysfunction
- Neuroendocrine dysfunction
- Immune dysfunction
Research is currently focused on three major areas of underlying dysfunction: mitochondrial, gastrointestinal, and immunological. Let’s take a closer look at each.
- The inability of the mitochondria to produce energy is key to the fatigue seen in ME/CFS. Research has shown that ME/CFS patients have metabolic abnormalities that are associated with a hypometabolic state, impaired glycolysis, and increased oxidative and nitrosative stress. Specific biomarkers of mitochondrial dysfunction include altered levels of CoQ10, NAD, L-carnitine, amino acid metabolites, phospholipids, and lactate. However, there is not one universal metabolic biomarker for the disease.
- Immune system dysregulation involves both under- and over-activation. The immune patterns are not specific to ME/CFS, but key features include flu-like symptoms, an imbalance of Th1 and Th2 immunity, low natural killer cells, changes to cytokine activation, elevated viral antibodies, and elevated autoantibodies.
There is currently no established treatment for ME/CFS, and efforts to find treatments have not been successful. Thus, current care is focused on management of symptoms. However, research suggests several targets for nutritional interventions, as follows:
Address overall diet and nutritional deficiencies.
- It may be impossible for patients to access, prepare, or even eat food. Therefore, patient and caregivers may need guidance on accessible food options.
- Due to poor overall diet quality, increased needs, and/or malabsorption due to GI disorders, a multivitamin and other supplements may be warranted. Possible recommendations include nutrients involved in mitochondrial and immune function such as B vitamins, selenium, zinc, and magnesium. Some studies have shown that CoQ10 and NADH may help improve symptoms. When adding supplements, it is recommended to “start low, and go slow”.
Improve gut health and reduce oxidative stress.
- A 2008 study found that improving the mucosal gut barrier and reducing oxidative stress reduced symptoms of ME/CFS. For 10-14 months, participants were put on a “leaky gut diet” that was dairy-free, gluten-free, and low-carb. They also took antioxidant substances such as L-carnitine, CoQ10, lipoic acid, and N-acetyl cysteine, as well as substances to support the gut barrier, such as glutamine. Twenty-four out of 41 patients showed either significant improvement or remission, with better results in those who were younger and who had had the disease for a shorter period of time. Improvements in symptoms were paralleled by improved markers of gut barrier function and inflammation.
Support mitochondrial function.
- A study published in 2013 showed promising results from a protocol focused on supporting mitochondrial function. The protocol includes eating a paleo-inspired diet, getting adequate sleep, taking selected nutritional supplements, and balancing activity and rest. This was a study of patients at a private practice, and not a strictly controlled trial. Yet, they found that all 30 patients who followed the protocol significantly improved in both symptoms and mitochondrial markers, and these 30 patients were some of the more severely ill ones.
There is a need for more research into ME/CFS, as well as a need for a shift in focus. It is straightforward to study one mechanism or nutrient at a time, but it is impossible to do randomized, controlled trials of treatments that are multifaceted and individualized. Yet, this is exactly what complex chronic diseases require.
The successful interventions mentioned above are linked by their comprehensive approach - they address diet, supplements, and lifestyle, they are tailored to the patient, and they last a year or more. Nutritional approaches like these are powerful because they can address the root causes of disease, even if the causes are not clearly understood. Treatments that consider the many features and pathologies of ME/CFS as part of an integrated system hold the most promise for improving care.
What nutritional interventions have worked best in the care of your clients with ME/CFS? We'd love to hear from you in the comments below.
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