Unfortunately, M.E. is also often referred to as chronic fatigue syndrome (CFS), 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 often abbreviated ME/CFS.
2.In order to be diagnosed with CFS in the U.S., you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50% as well as at least four of the following symptoms: post-exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory problems/difficulty concentrating. These symptoms must be present for six months or longer. This set of diagnostic criteria for CFS is referred to as the 1994 CDC Fukuda definition of CFS.
Many patients also suffer from severe neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, shortness of breath, chest pain, and many other symptoms. Some patients can experience seizures.
In 2011, a new international definition of M.E., the International Consensus Criteria, was established by doctors and specialists from around the globe and published in the Journal of Internal Medicine. It is yet to be known if/when the CDC will officially adopt it.
3. Studies have shown ME/CFS can 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 recently 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."
4. ME/CFS afflicts both genders and all age groups, including young children. Approximately one million Americans have ME/CFS. That's more than the prevalence of breast cancer, AIDS, or lung cancer combined.
Additionally, at least 17 million people suffer from ME/CFS world-wide.
5. It has been estimated that about 25% of ME/CFS patients are fully disabled, and many of those are bedridden or completely homebound.
6. ME/CFS often has a viral and sudden onset. 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.
7. In October of 2009, Science Magazine published a study showing a link between a newly discovered human retrovirus (XMRV) and ME/CFS. This study was conducted by the Whittemore Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic.
The FDA and NIH published a study in August of 2010 which found murine leukemia related viral sequences (MLVs) in nearly 87% of ME/CFS patients and only 7% of controls. MLVs are a family of gammaretroviruses, of which XMRV is a part.
Other studies have not yet been able to find XMRV or other MLV-related viruses in ME/CFS. Some feel this is the result of variations in methodology, while others believe the original findings may have been the result of contamination. As a result of the controversy, both papers have since been retracted. However, further studies continue, and thus far, the role of retroviruses in ME/CFS remains uncertain.
8. There are well over 5,000 published studies showing possible physical biomarkers in ME/CFS. Some known abnormalities include: low natural killer cell activity, activated T cells, increased levels of cytokines, abnormalities in brain metabolism, mitochondrial damage, orthostatic intolerance, low blood volume, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, glutathione depletion, oxygen toxicity/cellular hypoxia, diastolic cardiomyopathy, left ventricular dysfunction in the heart, and delayed V02 max (oxygen utilization) following exertion.
9. A February 2011 PLoS ONE study showed that people with CFS have unique cerebrospinal fluid proteins found only in CFS and not in healthy controls. The proteins in CFS also can be differentiated from those with Lyme disease. As an example, the study states that "the CDK5 signaling pathway was found to be significantly enriched for proteins identified only in the pooled CFS proteome. This signaling pathway has been linked to Parkinson's and Alzheimer's diseases."
10. In October 2011, a groundbreaking Norwegian study was published showing 2 out of 3 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.
11. 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 (in the bottom 12). More money is spent each year studying hay fever than ME/CFS.
12. Currently, there are no FDA approved treatments for ME/CFS and there is no cure.
Updated: December 2011
