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INTRODUCTION TO M.E.

Myalgic Encephalomyelitis (ME) is a neuroimmune disease with serious immune and cardiovascular abnormalities with resulting serious CNS (central nervous system) consequences due to brain injury.  The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, and cancer.  The pain, cognitive impairment and exhaustion are often literally unspeakable.  Most times ME strikes relatively quickly (within hours, days, weeks).  Once active and productive children and adults are robbed of vitality, with disability ranging from completely bedridden to somewhat functional.  Variable disability usually progresses to premature death.  (See Causes of Death)
     The cause of ME is unknown, but collective research suggests that a triggering initial immune system insult - usually a virus, but sometimes toxic exposure, bacterial infection, trauma, or other physical stressors - for unknown reasons  in some patients causes immune system dysfunction that results in a cascade of CNS damage and a vicious cycle among interconnected bodywide systems that explains the many and varied symptoms of M.E.
     Myalgic Encephalomyelitis is a clear-cut diagnosis with tests that can show the effects of ME such as: SPECT and PET Scans, Natural Killer Cell Function test, Rnase-L antiviral dysregulation, Spinal fluid protein abnormalities, and Blood Flow.  Infectious onset is most commonly observed.  Antivirals and immune modulators have shown promise, but funding for clinical trials has been scarce.  Few patients have had the resources and professional care to obtain effective treatments off-label.
     Thus, most diagnostic tools and treatments have been denied to the majority of patients, due in large part to government and insurance industry politics.  As a result, most patients are left to suffer lifelong disabling chronic progressive illness, and die significantly earlier than the norm with minimal or no treatment.  Many lose some or all of their livelihoods: jobs, homes, families.  Most are maligned in the same ways that MS and AIDS patients were in previous decades.  Most have significantly shortened life spans (averaging roughly around age 55) due to complications arising from ME - usually cancer or heart failure, and often suicide due to little hope of treatment for sometimes unbearable pain and prolonged poor quality of life.   And no one is immune; anyone of any race, age or gender can get ME.
    Despite advances in investigation into diseases such as MS and AIDS, the US government remains in the dark ages of medical research when it comes to ME  Independent researchers worldwide have long known ME, historically described as Atypical MS, Atypical polio, epidemic neuromyasthenia.  Many other historic descriptions have implicated infectious onset with chronic neurological and multi-system consequences.  (See our Epidemics and Definitions pages for ME history.)
     During cluster outbreaks in the mid-1980s, the US government ignored ME experts, renamed and redefined this illness in several regions of the US after a common symptom in numerous other diseases, i.e. fatigue, thus minimizing a disabling, possibly infectious disease.  It was a huge blunder - many claim deliberate - that has cost many lives, and continues to cause untold suffering.  "cfs" was never accurate and is no longer viable.   Norway's Directorate of Health apologized for past disregard of ME patients; US and other countries' health agencies need to follow Norway's example.
      Over late, the US government has recently elevated ME's priority, and the US Food and Drug Administration (FDA) now considers ME/cfs as "serious and life threatening", finally allowing treatments to be fast-tracked, after decades of delay. 
     ME has been classified as a neurological disease in the World Health Organization's International Classification of Diseases since 1969.  It is one of our goals is for this fact to become common knowledge in the medical community.
    Thankfully, there are many private and independent researchers in the US and abroad who are bringing to light the seriousness and severity of the neuroimmune, cardiovascular, endocrine, gastrointestinal and other body wide system damage found in ME patients.  Better diagnostic tools and treatments are finally being developed.
    The pages of this website describe just a few research findings, and attempt to summarize the early discoveries that have led researchers to the present.  They also offer information to patients and doctors, and direct the reader to more comprehensive information sources about ME and "cfs".

Issues Involving the Name Change Recommendations
"Researchers and clinicians need to be aware of the strong sentiments that patients have for [the name, definition and classification of] Myalgic Encephalomyelitis, which is historically correct (Ramsay, 1981) and has been used internationally (Hyde, Goldstein, & Levine, 1992)."
- Leonard A. Jason, Nicole Porter, Jennifer Okasinski, & Mary Benton - DePaul University -

ME & cfs Explained Pages

Definitions
Pages

Research Category
Pages

Additional Pages

Note: In this website, we support the distinctions made between ME and cfs as stated in The Nightingale Definition of Myalgic Encephalomyelitis (M.E.).  We also support the implementation of Myalgic encephalomyelitis: International Consensus Criteria (2011), as "The expert biomedical community will continue to refine and update the [2003 Canadian Consensus] case definition as scientific knowledge advances."**
     Reflecting the current but ever-changing state of research of this disease, we reject "cfs" definitions that are too often applied to ME patients, and too often result in great harm and even death to patients due to inappropriate treatments and/or neglect.  The unfortunate mislabeling of millions of ME patients worldwide with currently defined "cfs" causes untold harm.  We state this resolutely: the documented cases of harm and neglect continue to mount.  Too often, the disease presentation is the same no matter which case definition or label is used - correctly or incorrectly.  This is not the patients' faults.  It is a problem we hope our scientists will soon resolve once-and-for-all.  But until then, we feel ALL patients with neuroimmune disease would do well to not rule out any possibilities.  Research and treatments have been so sparse for this entire community of underserved patients, so we never know what new discoveries in all categories of neuroimmune diseases may apply to ME directly or indirectly, and thus force any or all definitions to evolve or to be left behind as relics of a rocky history.
      It appears, for now, the transition in terminology will continue until more is known about the entire group of neuroimmune diseases that include ME.
    Thus, one of our ultimate goals is to increase awareness that Myalgic Encephalomyelitis (ME) is a separate, distinct, long-defined, likely transmissible clinical entity, causing severe and prolonged disability in both children and adults, distinguishable from other severe neuroimmune illnesses.  ME presents unique objective and subjective features, with prevalence and severity in the U.S. and worldwide of a magnitude that is deserving of its own research and diagnostic categories, leading to much needed care of this vastly underserved, neglected population.  The cost to society in the U.S. is estimated at $18-$24 billion.  (Jason et al 2008)  But those are just numbers.  The cost in quality of life for the patients and their families is incalculable.
    We hope this website will help give patients, caregivers and the general public a better understanding of this disabling disease and the many issues that surround it.

(Read further commentary on the subject of terminology by Dr. Greensmith in the right sidebar of the ME/cfs Explained page.)

"Do not for one minute believe that cfs is simply another name for Myalgic Encephalomyelitis (M.E.).  It is not.  Though cfs is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality." - Dr. Byron Hyde

From the Editors, June 2010:  We apologize for our inability to update the NAME-US.org website in a timely manner, until further notice.  We are severely ill and declining patients, and the volume and speed at which research and other information has accelerated has outpaced our ability to keep up at this time.  We will make attempts from time to time to post some of the most notable breakthroughs or other news.  We will keep the NAME-US.org website online and running for those who wish to use it as a reference.  Thanks to all site visitors and those in the ME community for your support and understanding!

Tom Hennessy - In Memoriam
April 16, 1954 - September 9, 2013

Please send donations In Memory of Tom Hennessy to
Nightingale Research Foundation

"And if you want to find an accurate definition of Myalgic Encephalomyelitis, then google Byron Hyde,MD, of the Nightingale Foundation. It was Byron who told me about Florence Nightingale. When I researched the history of our little Ms. Flo, she sounded like MANY of the nurses I have met with M.E. over the years. When I found out that her birthday was in the springtime in the northern hemisphere, and early autumn in the southern hemisphere, I said, 'We have found our day'." -Tom Hennessy

We are honored to be mentioned in our friend Tom’s obituary. Tom's obituary designated Name-US.org as a place to make contributions in memory of one of our most stalwart advocates of ME & cfs Name and Definition issues.  Since Name-US.org is not a registered charitable organization and does not accept donations, we thought very hard about how best to honor Tom's memory.

Tom was known for his fearless advocacy on many fronts, but in the US and internationally, Tom is best known as the Founder of Awareness Day, May 12, Florence Nightingale's birthday.  So in the spirit of Tom's own words quoted above, we ask that donations to Name-US.org in Tom's memory be directed to The Nightingale Research Foundation.

From Name-US.org:
May Tom’s family and friends find comfort knowing one who suffered in so many ways for so long is now at peace. Tom’s tenacity and resilience lives on: He touched all of us with M.E., cfs and other neuroimmune diseases, imparting a will to press on with the fight when many others would give up. Tom’s experience, support, inspiration, advice, kindness, and humor in the face of his own pain have been and continue to be invaluable contributions to the neuroimmune disease community. Many have used “Warrior” to describe Tom. We like to think Warrior Tom bowed out with grace, perceiving that there is a new generation of warriors capable of wielding his sword with honor and renewed might!

Many patients and their caregivers do not have an extensive background in biology.  These pages contain many scientific, medical and technical terms that will only be helpful to people if they understand what they mean.  So we suggest that, as you browse these pages, you open the online medical dictionary in a separate window (it will do this automatically when you click on the link) to quickly look up an unfamiliar term and aid you in understanding this complex disease.  (You will also find a link to this reference in the sidebars of most of the pages on this website.)

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