Chronic fatigue syndrome (CFS) is a debilitating condition that affects up to 2.5 million Americans,1 incurring up to $51 billion in annual medical costs.2 There are actually a number of different names used for this condition, including myalgic encephalopathy/myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and chronic fatigue immune dysfunction syndrome (CFIDS).3 The most common designation is ME/CFS.
Without an ability to pinpoint a cause, many physicians have credited the condition to psychological roots. Reports of the condition were first published in the literature in 1934.4 It has only been very recently that researchers have found physiological commonalities between groups of individuals that has separated their symptoms from other comparable conditions.
Diagnostic changes have been discovered in gut bacteria and in brain tissue of individuals suffering from symptoms of ME/CFS. Now, scientists have found biomarkers in blood that correlate with ME/CFS symptoms. This combination of information puts researchers one step closer to finding a causative agent, and potentially improving treatment options.
What Is Chronic Fatigue Syndrome?
Researchers have not found a reason for the symptoms of ME/CFS. A significant hurdle is the fact that symptoms can vary widely from one person to the next. However, the most common symptom is one of overwhelming exhaustion that gets worse with physical or mental activity, and does not get better with additional rest.5 Interestingly, you may not experience the full extent of the exhaustion until up to 48 hours after the activity.
Complications from the symptoms may also include depression, social isolation, increasing absences at work and lifestyle restrictions that are related to an inability to function at your activities of daily living.6
The condition affects people of all socioeconomic, ethnic and racial groups as well as people of all ages.7 However, more people report symptoms in their 40s and 50s and women report symptoms four times more frequently than men. The way in which people who suffer from ME/CFS is not described completely by a simple list of symptoms. David Tuller, coordinator at the University of California (UC), Berkeley writes:8
“In an interview with The New York Times earlier this year, best-selling author Laura Hillenbrand (‘Seabiscuit,’ ‘Unbroken’), who has lived with CFS for decades, called the name of the illness ‘condescending’ and ‘so grossly misleading.’ She added: ‘The average person who has this disease, before they got it, we were not lazy people; it’s very typical that people were Type A and hard, hard workers …
Fatigue is what we experience, but it is what a match is to an atomic bomb. This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called ‘fatigue’ is a gross misnomer.'”
Symptoms of the condition may mimic other medical conditions necessitating a diagnosis by excluding other health conditions, such as thyroid disorders, sleep disorders and kidney or liver problems.9 These additional symptoms may include:10,11,12
|Muscle pain||Sore throat||Tender lymph nodes||Short attention span|
|Palpitations||Enlarged glands||Food intolerance||Memory problems|
|Irritable bowel-like symptoms||Pain in multiple joints||Visible muscle twitching||Intermittent flu-like symptoms|
|Word find problems||Fainting||Mood swings||Gastrointestinal problems|
|Headaches||Difficulty sleeping||Clumsiness||Alcohol intolerance|
|Difficulty concentrating||Excessive sweating||Difficulty with temperature control||Hypersensitivity to light and noise|
New Study Finds Biomarkers Indicating an Inflammatory Problem
A recent study from Stanford University School of Medicine identified 17 biomarkers in the blood that correlated closely with reported symptom severity in patients suffering from ME/CFS.13 These biomarkers are cytokines, small proteins your immune system secretes that are used by other cells in your body. This new finding offers hope to both sufferers and physicians, as it provides objective evidence and concrete confirmation of the existence of ME/CFS. It may also lead to better treatment options or a cure.
During the study, researchers analyzed blood from over 185 people who suffer from ME/CFS and had suffered symptoms for at least 10 years. These were compared against blood samples of over 385 healthy individuals.14 They tested for 51 different cytokines in all individuals and found two that were significantly different between the groups.
However, in looking more closely at the cytokines tested in the symptomatic group, the researchers also found different levels of 17 cytokines that appeared to correlate with the severity of the symptoms the individual reported. The researchers hypothesized this had not been discovered in prior studies as the high levels of cytokines in some individuals that were low in others, may have canceled out the information.
Of the 17 cytokines identified in this study, 13 are known to be associated with increased levels of inflammation. This confirms a suspicion of some researchers that symptoms of fluctuating flu-like symptoms and body aches associated with ME/CFS is linked to an inflammatory response.15 Senior researcher Mark M. Davis, Ph.D., from Stanford University, commented:16
“There’s been a great deal of controversy and confusion surrounding ME/CFS — even whether it is an actual disease. Our findings show clearly that it’s an inflammatory disease and provide a solid basis for a diagnostic blood test.”
Inflammatory Response May Be Triggered by Leaky Gut
Another recent study from Cornell University found a difference in the gut microbiome of people diagnosed with ME/CFS and a group of healthy individuals.17 This discovery may help shed some light on diagnostic procedures for other health conditions and lead to strategies for treatment and prevention of ME/CFS. The differences the researchers found were evident in both blood and stool samples.
The researchers used DNA sequencing to find a distinct lack of diversity in the gut microbiome of individuals and found inflammatory biomarkers in their blood.18 The changes could not be clearly linked to either a cause or consequence of the condition. Professor of molecular biology and genetics at Cornell University, Maureen Hanson, Ph.D., commented in The Washington Post:19
“Our work demonstrates that the gut bacterial microbiome in chronic fatigue syndrome patients isn’t normal, perhaps leading to gastrointestinal and inflammatory symptoms in victims of the disease. Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.”
The researchers theorize these markers could be the result of a “leaky gut from intestinal problems that allow bacteria to enter the blood.”20 A leaky gut is triggered by the development of “gaps” that occur between the membrane walls that line the intestines. This allows material that was meant to stay in your intestinal tract, such as undigested food, bacteria or waste products, to leak into your bloodstream.
There is a distinct link between the development of these gaps and the food you consume each day. Grains are particularly problematic as research demonstrates gluten stimulates zonulin, a protein in your gut that triggers the opening of these junctures.
Legumes and other lectin-rich foods are also best avoided21 if you are struggling with an inflammatory condition such as ME/CFS. Not all people with a leaky gut will develop ME/CFS, but healing and sealing your gut may help to reduce the inflammatory response in your body and result in a reduction in symptoms.
Neurological Changes Also Found in People Suffering From ME/CFS
ME/CFS sufferers also experience changes in the white matter in their brains, another piece of concrete evidence that it’s a real physiological condition.22
Using new technology, imaging studies were used to distinguish differences in the brains of people who suffer from ME/CFS compared to those who don’t. ME/CFS sufferers had both a diminished amount of white matter and changes to the right hemisphere of the brain. Researchers commented in a press release from Stanford Medical Center where this study was also completed:23
“It’s not uncommon for CFS patients to face several mischaracterizations of their condition, or even suspicions of hypochondria, before receiving a diagnosis of CFS. The abnormalities identified in the study … may help to resolve those ambiguities …”
The study exposed three findings:
- A reduction in brain white matter responsible for transporting information throughout the brain. This was not unexpected as chronic inflammation has a known effect on white matter.
- A consistent abnormal appearance using advanced imaging techniques in patients suffering from ME/CFS in the right hemisphere of the brain, which connects the frontal and temporal lobes.
- Thickening of the gray matter in the brain on either end of the white matter between the temporal and frontal lobes, indicating it is highly unlikely the findings were coincidental.
ME/CFS Sufferers Struggle With More Than the Disease
Although the condition is often physically and emotionally devastating, sufferers struggle with many other challenges as well. Lead researcher in the study that demonstrated cytokine biomarkers in the blood of people who suffer from ME/CFS, Dr. Jose Montoya, told NPR News:24
“This is a field that has been full of skepticism and misconception, where patients have been viewed to have invented their disease. These data clearly show the contrary, and demonstrate what can be achieved when we couple good research design with new technology.”
Unfortunately, information from these studies does not quickly reach practicing physicians, and patients continue to be met with resistance and recommendations they improve their physical conditioning based on the PACE trial published in the Lancet,25 which recommends cognitive behavioral therapy and physical exercise to cure patients with ME/CFS.
This study appeared to use a large cohort of patients and underwent peer review before being published. However, after the raw data from the study was released, it revealed several major flaws in the assumptions of the researchers.26
Prior to the study the researchers determined their standards for success, defining “recovery” and “improvement.” However, once the unblinded portion of the study began, the researchers revised the definitions so patients could actually get worse over the course of the study in both fatigue and physical function and still would be classified as being “recovered.”27
Tuller published his analysis of the study results,28 and another recent analysis confirms his evaluation the PACE trial, which he concluded was severely flawed and made poor conclusions.29 The damage to individuals and their families by physician-driven recommendations to increase physical activity and seek psychological care to cure their condition contributes greatly to the emotional and mental burden these people must bear.
In another analysis of this patient population, researchers evaluated any increased risk of death caused by a diagnosis of ME/CFS. While they found no increase in all-cause mortality, there was a significant increased risk of death due to suicide that accompanied a diagnosis of ME/CFS.30
Could Mitochondrial Support Help Reduce Symptoms?
It stands to reason that a condition that triggers an inflammatory response in the body and that results in overwhelming fatigue will respond favorably to lifestyle choices that reduce inflammation and support the function of your mitochondria. These tiny powerhouses are an interconnected network that rapidly and effectively distributes energy throughout your body’s cells.31
In other words, supporting a system that provides energy to all the cells in your body will likely affect many health conditions, not just ME/CFS. Studies of mitochondrial function have increased our understanding of the development of heart disease and other mitochondrial diseases, including cancers.
There are significant challenges to your health when you experience mitochondrial dysfunction. It plays a role in neurodegenerative diseases, seizure disorders, diabetes, hypertension and more. In fact, many of the conditions being treated with toxic drugs could potentially resolve with proper nutritional and lifestyle intervention that addresses the fuel your cells use for energy.
Healthy Support Options to Use at Home
At this time there is no known cure for ME/CFS, but there are methods of supporting your body to alleviate your symptoms,32 including the foods you choose and the decisions you make throughout your day. Each of these choices may not only help reduce your symptoms of ME/CFS, but also may help improve your overall health. Practical changes to your nutritional plan that can help heal your gut and lower inflammation include:
•Avoid gluten and wheat products: Gliadins, a component of gluten, are a class of protein found in wheat and cereals. These proteins increase the permeability of your gut. Keep in mind that gluten can also be found in other grains, not just wheat. Wheat germ agglutinin (WGA) is a lectin, or plant protein found in high concentration in seed form.
Bread wheat is a relatively new form of wheat that has a resilient and problematic form of WGA. It plays a key role in a toxic effect on your kidneys, and there is evidence it increases the damage to your intestinal membrane walls.
•Avoid lectins: Some lectins, including WGA, bind to receptor sites on your intestinal mucosal cells and interfere with absorption of nutrients. As such, they act as “antinutrients,” and can have a detrimental effect on your gut microbiome by shifting the balance of your bacterial flora — a common precursor to leaky gut.
Lectins are also strongly associated with autoimmune diseases of all kinds. To learn more, including which foods are best avoided due to high lectin content, please see “How to Reduce Lectins in Your Diet.”
•Reduce your net carbs: The carbohydrate sugar, like grains, will upset the balance of microbes in your gut. Sugar is the food source for bacteria that can prompt damage to your intestinal walls, while fiber is the food source for bacteria that build your intestinal membranes.
Your net carbs are the total grams of carbohydrates you’ve eaten in a day, minus the grams of fiber you’ve eaten. The difference is your net carbs. Seek to reduce your net carbs to 50 grams per 1,000 calories of food eat each day.
•Increase your fiber intake: The fiber you eat from whole foods is the nutrient source for bacteria in your gut that help maintain and build the membrane cells in your intestinal walls. This helps to seal the “gaps” between the cells and reduces any leakage of waste products and bacteria into your blood stream. Focus on eating whole food vegetables, nuts and seeds (with the exception of lectin-rich varieties).
•Eat fermented foods: Although the idea of eating “fermented” foods may sound distasteful, you might be surprised by the list of tasty delicacies produced through this ancient preparation and preservation technique. By breaking down carbohydrates and proteins using bacteria, foods become functional, delicious and a source of natural probiotics to feed your gut.
Olives, pickles, cheese from grass fed cows, homemade yogurt and sauerkraut are just a few of the foods you may not have considered. Your best bet is to make your own. In this video, Julie and I demonstrate how to make your own fermented vegetables at home.