Our Goals • News • Site Map

INTRODUCTION TO M.E.

Myalgic Encephalomyelitis (M.E.) is a neurological disease with serious CNS (central nervous system) consequences due to brain injury, with serious cardiovascular and immunological consequences. 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.
     Yet these and other diagnostic tools and treatments have been denied to most patients, due in large part to government and insurance industry politics.  As a result, most patients are left to suffer and survive lifelong disabling chronic illness or die on their own 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 lifespans due to complications arising from 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.  M.E. has been historically known worldwide by descriptions such as Atypical MS, Atypical polio, epidemic neuromyasthenia and many other descriptions implicating infectious onset with chronic neurological and systemic consequences.
     Sorely needed is recovery of the clearly delineated Dr. Melvin Ramsay criteria, and focus which has been carried through by Dr. Byron Hyde and augmented by the 2003 Consensus Criteria. Also needed is common knowledge that M.E. is a neurological disease like MS and has been classified as such in the World Health Organization's International Classification of Diseases since 1969, no matter the denial of US government health officials.
    Ignoring a real disease, Myalgic Encephalomyelitis, and renaming this illness after a common symptom in numerous other diseases is no longer viable or truthful.
    Thankfully, there are many private and independent researchers in the US and worldwide who are slowly bringing to light the seriousness and severity of the neurological, immunological, cardiovascular 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 you to more comprehensive information sources.

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 firmly support the distinction between ME and CFS as stated in The Nightingale Definition of Myalgic Encephalomyelitis (M.E.).
   However, we occasionally use the proposed interim acronym "ME/CFS" to reflect the current but ever-changing state of research of this disease - that is, M.E. referring to historically defined M. Encephalomyelitis (Acheson, Ramsay, Dowsett, Richardson, etc.), also as referred to in the peer-reviewed Canadian and Pediatric definitions, and as recognized as code G93.3 by the World Health Organization (WHO). We do NOT recognize or promote the term M. Encephalopathy, as referred to casually and sometimes professionally by a few groups but is NOT recognized by any WHO code, as we feel it only adds to the confusion that has hindered research into the recognized disease, M. Encephalomyelitis.  (It appears for now the confusion and debate about terminology will continue until more is known about this entire group of neurol-immune illnesses.)
    Unfortunately, much of the research has been conducted under the "chronic fatigue syndrome" and "fatiguing illnesses" umbrella, using sub-standard "CFS" research definitions.  Thus, one of our ultimate goals is to increase awareness that Myalgic Encephalomyelitis (M.E.) is a separate, distinct and long-defined clinical entity, causing severe and prolonged disability, 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.
    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

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.)