WHAT IS ME/CFS?

 
1. NAME/CLASSIFICATION: ME stands for myalgic encephalomyelitis -- a complex, multi-systemic condition affecting the immune, endocrine, cardiovascular, autonomic and central nervous systems.  It is classified by the World Health Organization (WHO) as a neurological disease.

Unfortunately, ME is also often inappropriately referred to as chronic fatigue syndrome (CFS).  This is a highly trivial-sounding name given to the disease by the Centers for Disease Control (CDC) after one of the largest U.S. outbreaks of the illness in Incline Village, NV in the 1980s.  It is now thus sometimes abbreviated ME/CFS.

2. SYMPTOMS: The hallmark and often primary symptom of ME/CFS is what is referred to as post-exertional malaise (PEM) or post-exertional neuro-immune exhaustion (PENE) --  a severe worsening of all symptoms after any physical or cognitive exertion. This exacerbation of symptoms lasts for more than 24 hours and can often persist for days, weeks, months or longer, depending on its severity.  Other symptoms include extreme/incapacitating exhaustion that is not alleviated by rest and reduces one's activity level by at least 50 percent, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, sensory overload (sensitivity to light and sound), memory problems/difficulty concentrating, orthostatic intolerance, exercise intolerance and shortness of breath.

3. SEVERITY:  As with many illnesses, cases can vary from mild to severe.  However, studies have shown ME/CFS can often be as or more debilitating than multiple sclerosis, lupus, COPD, heart failure, late-stage AIDS and end-stage renal failure.  Dr. Nancy Klimas, an immunologist who splits her time between ME/CFS and HIV/AIDS patients, was once quoted as saying: "I can tell you, if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

Though exact numbers are unknown, it is thought that about 25% of ME/CFS patients are fully disabled (bedridden or completely housebound).

4. PREVALENCE:  It has been estimated that approximately one million Americans have ME/CFS. That's more than double the prevalence of multiple sclerosis.  Additionally, at least 17 million people suffer from ME/CFS world-wide. ME/CFS afflicts both genders and all age groups, including young children.

5. PATHOLOGY:  ME/CFS often has a viral and sudden onset. While the cause is unknown, many viruses have been linked to CFS, including EBV (mononucleosis), CMV and HHV-6. Bacterial infections have also been associated with the disease, including mycoplasma, Q Fever and Lyme disease.

There are thousands of published studies showing physical dysregulation in ME/CFS. Some known abnormalities include: low natural killer cell activity, activated T cells, increased levels of cytokines, abnormalities in brain metabolism, orthostatic intolerance, low blood volume and other cardiovascular issues, problems with oxidative phosphorylation and methylation,  mitochondrial abnormalities and delayed V02 max (oxygen utilization) following exertion.


In October 2011, a groundbreaking Norwegian study was published showing 2/3rds of ME/CFS patients experienced significant improvement in symptoms using a chemotherapy drug called Rituximab.  Rituximab "destroys both normal and malignant B cells that have CD20 on their surfaces, and is therefore used to treat diseases which are characterized by having too many B cells, overactive B cells or dysfunctional B cells." The fact that this drug appears to work in ME/CFS suggests that the illness may be a type of auto immune disease. For more information, check out this excellent summary.

In 2015, renowned scientists Ian Lipkin and Maddy Hornig of the Center for Infection and Immunity at Columbia University identified distinct immune changes in patients diagnosed with ME/CFS.  The immune signatures discovered point to distinct stages in the disease, and supports the idea that ME/CFS may reflect an infectious “hit-and-run” event:   “It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop,” says Dr. Hornig.

In September of 2016, Dr. Robert Naviaux of  University of California's San Diego School of Medicine published a metabolomic study which showed that cells of ME/CFS patients appear to be in what's called a hypometabolic (or dauer) state in response to an infection, toxin or other threat.

In Naviaux's words, "when the CDR [cell danger response] gets stuck, or is unable to overcome a danger, a second step kicks in that involves a kind of siege metabolism that further diverts resources away from mitochondria and sequesters or jettisons key metabolites and cofactors to make them unavailable to an invading pathogen, or acts to sequester toxins to limit systemic exposure. This has the effect of further consolidating the hypometabolic state.  ...CFS is an objective metabolic disorder that affects mitochondrial energy metabolism, immune function, GI function, the microbiome, the autonomic nervous system, neuroendocrine, and other  brain functions. These 7 systems are all connected in a network that is in constant communication. While it is true that you cannot change one of these 7 systems without producing compensatory changes in the others, it is the language of chemistry and metabolism that interconnects them all."

Other  scientists have had similar results, including one conducted in Australia earlier in 2016. It found irregularities in energy metabolism as well as amino acid, nucleotide, nitrogen, hormone and oxidative stress metabolism. They state that "the overwhelming body of evidence suggests an oxidative environment with the minimal utilization of mitochondria for efficient energy production."


6. ECONOMIC BURDEN: ME/CFS is thought to cost the U.S. economy about $25 billion a year, and perhaps more. The average cost per family of a ME/CFS patient is approximately $25,000 per year (including unemployment). Yet, despite its prevalence and seriousness, ME/CFS is still one of the least funded of all illnesses in the United States (it remains in the bottom 12). More money is spent each year studying hay fever than ME/CFS.

7.  TREATMENTS: Currently, there are no FDA approved treatments for ME/CFS and there is no known cure.  However, research continues and there is always reason to hope.

Updated:  January 2017