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INTRODUCTION TO M.E.

Myalgic Encephalomyelitis (M.E.) is a neuroimmune disease with serious immune and cardiovascular abnormalities and 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.
     Myalgic Encephalomyelitis is a clear-cut, definitive diagnosis with tests that can show the effects of M.E. such as: SPECT and PET Scans, Natural Killer Cell Function test, Rnase-L antiviral dysregulation, 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 those treatments off-label.
     So 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.  Most are maligned in the same ways that MS and AIDS patients were in previous decades.  Most have significantly shortened life spans due to complications arising from M.E.  And no one is immune; anyone of any race, age or gender can get M.E.
    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 M.E.  Independent researchers worldwide have long known M.E. historically described as Atypical MS, Atypical polio, epidemic neuromyasthenia.  Many other historic descriptions have implicated infectious onset with chronic neurological and multi-system consequences.
     In the mid-1980s, the US government ignored M.E. experts, renamed and redefined cluster outbreaks of this illness in several regions of the US after a common symptom in numerous other diseases, i.e. fatigue.  "CFS" was never accurate and is no longer viable.
     Sorely needed is recovery of the clearly delineated Dr. Melvin Ramsay criteria, and focus that has been carried through by Dr. Byron Hyde and augmented by the 2003 Consensus Criteria. Also needed is common knowledge in the medical community that M.E. is classified as a neurological disease in the World Health Organization's International Classification of Diseases since 1969.
    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 M.E. patients.  Diagnostic tools and treatments are within our grasp.
    The pages of this website describe just a few of the most recent 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/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
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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 2003 Consensus Criteria , and the proposed interim acronym "ME/CFS" to reflect the current but ever-changing state of research of this disease.  The difference lies within several differing case definitions, but not necessarily always within disease presentation.  This is not the patients' faults.  Often, the disease presentation is the same, no matter which case definition is used.  It is a problem we hope our scientists will soon resolve.  But we feel ALL patients with neuroimmune disease would do well to not rule out any possibilities, as research and treatments have been so sparse for this entire community of underserved patients, and we never know what new discoveries will force any or all definitions to evolve.
      So it appears for now the debate about specific terminology will continue until more is known about the entire group of neuroimmune illnesses that include M.E
      Unfortunately, much of the research has been conducted under the "chronic fatigue syndrome" and "fatiguing illnesses" umbrella, using sub-standard "CFS" research definitions.  But we see on the horizon hope of a phasing out of the misleading "CFS" definitions and terminology linked to this illness.  Thus, one of our ultimate goals is to increase awareness that Myalgic Encephalomyelitis (M.E.) is a separate, distinct, long-defined, likely transmissible clinical entity, causing severe and prolonged disability in both children and adults, distinguishable from a host of other fatiguing illnesses, with 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 neglected population.
    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.

Dr. Vance Spence:  "At present, the composite term ME/CFS is used, though the conjunction of the two terms is still problematic."

Dr. John Greensmith explains:  “M.E. is recognised by the World Health Organisation as a neurological illness, for which the physical cause is as yet unknown and is categorised differently from Chronic Fatigue Syndrome.  Bundling them [fatiguing illnesses] all together weakens any research experimental design, dilutes and distorts the findings, making it difficult, if not impossible, to generalise to any one particular illness and, therefore, hampers progress towards finding an appropriate treatment or cure for every one of them, packaged under the controversial umbrella term CFS, not just M.E."

(Read further commentary on this subject 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

"...there are a number of unique characteristics that differentiate ME from CFS...." -Dr. Julie Gerberding, Director US Centers for Disease Control

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!

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.)