Our Goals • Advocacy • Site Map

 
   

"Myalgic encephalomyelitis (ME) is a severe, complex neurological disease that affects all body systems.  ME is more debilitating
than most diseases."
2012 ICC Physican's Primer

"In my experience, [ME/CFS] is one of the most disabling disease that I care for, far exceeding HIV disease except for the terminal stages."
Dr. Daniel Peterson

"We consider [ME/cfs] to be in the category of serious or life threatening diseases."
US FDA

   

!! BULLETIN !!
US & International ME & cfs Experts Take a Stand to STOP the US Government's attempt to redefine M.E.

Thank you,
M.E. Advocates
!

Redefinition conflict
in the news...

 
   

HomeM.E. or cfs ?DefinitionsResearchLinks

 
   

The National Alliance for Myalgic Encephalomyelitis
was established to address the issues of recognition and definition,
and to raise awareness of this devastating neuroimmune disease
that has afflicted nearly a million people in the U.S., and 17 million worldwide.
What is ME?

 

"In view of more recent research and clinical experience that strongly point to
widespread inflammation and multisystemic neuropathology, it is more appropriate
and correct to use the term 'myalgic encephalomyelitis' (ME) because it indicates
an underlying pathophysiology."
Carruthers et al
Journal of Internal Medicine


Research
In The Spotlight

Many ways you can
Contribute to Research...

 

Journal of Internal Medicine
July 2011

Myalgic Encephalomyelitis: International Consensus Criteria

  Myalgic Encephalomyelitis - Adult & Paediatric: International Consensus Primer for Medical Practitioners

International Consensus Panel
Editors: Bruce M. Carruthers, MD, CM, FRACP(C), Marjorie I. van de Sande, B Ed

October 2012
A must for every health care professional!

[2013] Immune Abnormalities in Patients Meeting New Diagnostic Criteria for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
Brenu EW, Johnston S, Hardcastle SL, Huth TK, Fuller K, Ramos SB, Staines DR. Marshall-Gradisnik SM

 
 

INTRODUCTION TO M.E.

    MYALGIC      (muscle pain)
+
ENCEPHALO  (relating to the brain)
+
MYEL           (relating to the spinal cord)
+
ITIS                (inflammation)
=
MYALGIC ENCEPHALOMYELITIS
= Brain and spinal cord inflammation with associated muscle pain

OVERVIEW
Myalgic Encephalomyelitis (ME) is a chronic degenerative neuro-immune disease described in medical literature as early as 1935.  A child or adult with ME has 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 unrelenting pain, cognitive impairment and exhaustion of ME are often literally unspeakable.  Most times ME strikes relatively quickly (within hours, days, weeks).  Once active and productive children and adults are suddenly robbed of vitality, with disability ranging from completely bedridden to somewhat functional.  Variable disability and lack of treatments result in lowered or poor quality of life.  ME usually progresses to premature death due to direct and indirect complications of the disease.   Among the leading causes of death are heart failure and cancer, average life span 58.7 and 47.8 respectively, which is considerably younger than the general population (heart failure, 83.1; cancer, 72 - See Mortality).  Direct and indirect costs to society (US):  $18 - $24 Billion annually.

CAUSE
The cause of ME is unknown, but collective research suggests that an initial immune system insult - usually a virus, but sometimes toxic exposure, bacterial infection, trauma, or other physical stressors - trigger a cascade of immune system dysfunction that results in a cascade of CNS damage.  A vicious cycle among these and other interconnected bodywide systems explains the many and varied symptoms of M.E.

DIAGNOSIS
Since 1969, Myalgic Encephalomyelitis has been listed in Diseases of the Nervous System of the WHO ICD (World Health Organization International Classification of Diseases), current diagnostic code, G93.3 (323.9 in the US).  Just a few among many tests that can show the effects of ME are: SPECT and PET Scans, Natural Killer Cell Function test, Rnase-L enzyme dysregulation, Spinal fluid protein abnormalities, Blood Flow, and Serial Exercise tests Infectious onset is most commonly observed.  The hallmark symptom is Post-Exertional Neuroimmune Exhaustion (PENE, in lay terms: post-exertional major exacerbation of symptoms) - exertion being anything from talking or listening, to walking across a room to going to the grocery store, depending on an individual's disease length and severity.  Hypersensitivity to  even minor sensory stimulation, an almost universal ME symptom, can cause PENE.  Orthostatic intolerance (symptoms worsen in an upright position) is also common.  These and many more symptoms  usually result in the patient being bedbound or homebound.  PENE can be objectively documented by serial exercise tests, can last anywhere from days to weeks, and can be immediate or delayed by 24 hours or more.  Symptoms can vary from hour to hour, day to day, month to month.  Aerobic activity and repeated activity beyond an individual's threshold worsens prognosis.  (See Ramsay)

TREATMENT
Antivirals and immune modulators have shown exciting promise, but funding for clinical trials has been scarce.  Few patients have had the resources and professional care to obtain effective treatments off-label.  Otherwise, treatments are palliative at best - sleep aids, pain killers, nutritional supplements, and most effective, according to many patient surveys, rest and slow pacing of alternating mild activity and rest.  Even then, most patients report 30% or less of their pre-illness function and productivity.

NO TREATMENTS SINCE 1935?!  WHY NOT?!
M
ost 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.  And as a result, most have significantly shortened life spans (averaging roughly around age 57) due to complications arising from ME - usually cancer, heart failure, other organ failure, various complications, 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 of or attempted to treat ME, historically described as Atypical MS, Atypical polio, epidemic neuromyasthenia, non-HIV AIDS.  Many other historic descriptions have implicated infectious onset with chronic neurological and multi-system impacts.  (See our Epidemics and Definitions pages for brief 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 (we believe rightly so) - that has cost many lives, and continues to cause untold suffering and cost lives.  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.  But ME patients are still waiting for that promise to come to fruition; it is painfully slow.
     Thankfully, there are many private and independent researchers in the US and abroad who are shining a light on 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 slowly being developed, while researchers and patients alike are astounded that male pattern baldness receives nearly three times the funding of ME!
     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.
    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 -

"Hopefully one day, my dream is that our medical community will produce a formal apology to the patients that—not having believed them all these years—they are facing a real illness."  -Dr. Jose Montoya

 

TABLE OF CONTENTS

ME & cfs Explained
Pages

M.E. or cfs ?
Symptoms List
Test Abnormalities
Patient Resources
Doctor Resources

 

Definitions
Pages

Definitions Overview
ICC - Consensus Criteria
Canadian Consensus
Dr. Byron Hyde
Historic ME
Dr. A. Melvin Ramsay
Dr. E.G. Dowsett
Prof. Malcolm Hooper
ME/cfs Australia
Pediatric ME & cfs
cfs

 

Research Category
Pages

Research Overview
Contribute to Research
Neurology
Immunology
Circulatory/Cardio
Mitochondria/Energy
Genetics
DePaul Univ/Jason
Oxidative Stress
Epidemiology


About Our Banner Images


"...now there’s
proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to
that of patients with late-stage AIDS, patients undergoing chemotherapy, or  patients with multiple sclerosis."
-Dr. Nancy Klimas-


"It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives."
-Dr. Judy Mikovits-


“Hope becomes irrelevant.... It’s much more ‘endurance’ – hoping you’ll get through it day by day. It’s more to do with how you’ll get through the next hour, and how you'll get the next afternoon, and the next night, and the next day, and the next year.”
-Jane Colby-
Director, Young ME Suffer’s Trust, 2011 Shropshire ME Group Conference



Please donate if you can:

"When you come down with an illness that has no end, it strips away that idea of a future." - Howard Bloom

From the upcoming documentary
Canary
in a Coal Mine

by Jennifer Brea


Blood Donation Bans

Australia, New Zealand, Canada have banned blood donations from ME/cfs patients, and the  American Association of Blood Banks has recommended ME/cfs patients to not donate blood.  The European ME Alliance has also called for a Europe-wide ban on blood donations from ME/cfs patients.


Background image:
Natural Killer Cells
Many ME/cfs patients have a deficiency of, and poor function within, these vital  immune cells that target cancer cells and cells infected with viruses.

 
             
 

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.
      I
t 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

NCF's Memorial List

   
 

Many patients and their caregivers new to M.E. do not have an extensive background in biology. We suggest that, as you browse these pages, you open the online medical dictionary in a separate window to quickly look up an unfamiliar term and aid in understanding this complex disease.

   
 

Home • ME & cfs Explained • Definitions • The Research • About Us

 
   

© 2006-2014 National Alliance for Myalgic Encephalomyelitis
All rights reserved

 

Note:  This website was designed in consideration of the light hypersensitivity suffered by many ME/cfs patients.

Disclaimer & Reprint Policies

Please report broken links to
webmaster@name-us.org

(Best viewed in MS Explorer)