Myalgic Encephalomyelitis

Myalgic encephalomyelitis (ME) is an immunological and neurological disease with an infectious component and/or etiology. The disease typically has an acute onset of a viral or bacterial infection or toxin/chemical exposure.

It has historically appeared in epidemics and sporadic forms. Due to the numerous outbreaks decades ago, it has been theorized the disease has now become endemic to most populations. In addition, the abysmally poor medical education on the disease has resulted in most people being misdiagnosed. Even if the Centers for Disease Control (CDC) were to perform epidemiology studies today, the misdiagnoses would prevent accurate representation of the disease burden.

It is estimated this disease strikes about one million American men, women and children and about 17 million worldwide. Most patients are disabled and cannot work and about 25% are bedbound and cannot care for themselves.

The key feature of ME is a post-exertional exacerbation of symptoms including mitochondria and immune dysfunction along with cognitive impairment. This is known as Post-exertional Neuroimmune Exhaustion (PENE) and is defined in the 2011 International Consensus Criteria.

The medical community has not been educated on the proper diagnosis of ME and as a result many patients have been diagnosed with fibromyalgia, depression, bodily distress disorder (BDD), medically unexplained symptoms (MUS) chronic fatigue syndrome (CFS) or systemic exertion intolerance disease (SEID) and many conditions that can be mistaken for ME. For a list of conditions to look for see the ME International Consensus Primer.

Labels have various meanings so it is important to clarify which criteria a label is attached to. See labels with criteria listed in the “Disease Names” section on this page.

Historically research using the CFS criteria has given a muddied range of results depending on the clinicians who provide the cohorts. Clinicians who specialize in ME/CFS tend to do extensive testing/screening outside of what the CFS criteria or the Center for Disease Control website indicates.

When research cohorts are enlarged using patients diagnosed by non-specialists, then inaccurate research results are obtained. Much like the inaccurate research that determined that gradual exercise therapy and cognitive behavioral therapy improve symptoms. When these treatments were used, those patients that actually had ME did not improve or were worsened temporarily or permanently.

There are only a small number of clinicians worldwide that can accurately diagnose this disease, but due to political and government pressures many of those clinicians group ME under the large CFS diagnosis.

May12.org hosts a project called MEadvocacy.org to address the specific needs of ME patients.

The goals of MEadvocacy.org:

  • Advocating for Myalgic Encephalomyelitis to be officially recognized as its own distinct disease in the US.
  • Promoting adoption of the ME experts’ definition International Consensus Criteria (ICC) for diagnosis and research.
  • Securing government funding to study ME as defined by ICC, at a minimum of $250 million annually – an amount on par with similar diseases such as Multiple Sclerosis.

Disease Names:

Recognizing Disease Labels

There have been many names given to the different patient populations involved in the history of ME.

To improve clarity, May12org will use labels that associate names with their criteria.

Red = Fatigue narrative
Blue = Immunological/neurological disease
Purple = Combo of fatigue narrative and immunological/neurological disease

  • ME-Ramsay (Ramsay case description - 1981) Link
  • CFS-Holmes (Original CFS description - 1988) Link
  • CFS-Oxford (UK criteria - 1991)  Link 
  • CFS-Fukuda (Fukuda - 1994) Link
  • CFS-Reeves (Empirical - 2005) Link   
  • ME/CFS-CCC (Canadian Consensus Criteria - 2003) Link
  • ME-Hyde (Dr. Byron Hyde - enteroviruses - 2007/updated 2016) Link
  • ME-ICC (International Consensus Criteria - 2011) Link
  • ME/CFS-SEID (Systemic Exertion Intolerance Disease - Beyond ME/CFS IOM Report - 2015) Link

Shared Disease Pathways & Causes:

Patients may have ME, fibromyalgia, undiagnosed Lyme disease (including chronic or late stage), exposure to those with Gulf War Illness, mold/biotoxin Illness, post-sepsis syndrome, and/or other undiagnosed/untreated conditions. Please see our other Resources tabs for further information about those diagnoses.

It is important to advocate for yourself and work with your doctor(s) on evaluating for disease. Most doctors have not been educated by the medical establishment on the knowledge that clinical experts have acquired on these diseases.

Various research has shown shared disease pathways between patients with these diagnoses and also unique disease pathways that can differentiate between them. This may be due to shared causes, subsets with different microbiome of co-infections, or the inability for current biomedical tests to distinguish conditions from each other.

One shared cause is infection with xenotropic murine leukemia related virus (XMRV family of retroviruses) which suppresses the immune system. Based on infection with XMRV and other environmental exposures one has acquired over time can result in different subsets of patients. Environmental exposures such as  toxins and pathogens such as: viruses, bacteria, spirochetes, fungi, mold toxins, and heavy metals. The government scientific community that has conflict of interest with the pharmaceutical/medical industry has fraudulently suppressed the ability to be diagnosed with XMRV.* ME and CFS clinicians are left on their own to diagnose based on symptoms and in the case of ICC, diagnostic tests that are not available to most physicians.

This group of diseases share immune suppression and dysregulation which results in opportunistic infections and poorly controlled co-pathogens. A different but overlapping group of co-pathogens can result in a variety of subsets. In addition, research has shown the individuals with this group of diseases might have genetic risk factors involving the MFTHR cycle that reduce the body’s ability to detoxify from acquired toxins.

Over the years there have been many studies associating various pathogens to CFS and ME. Some of those are:

  • Undiagnosed Lyme disease (including chronic or late stage) - due to high rate of false negative testing using the CDC sanctioned “Dearborn” fraudulent test methods
  • Enteroviruses
  • Xenotropic Murine Leukemia Related Virus (related to murine leukemia retrovirus)*

Pathogens that are prevalent in general population but may contribute to disease pathways when immune suppression from CFS/ME/Lyme allows for them to become opportunistic infections:

  • Human Herpes Virus 6 &7 (HHV-6a &b)
  • Epstein Barr virus (EBV)
  • Coxsackie Viruses
  • Cytomegalovirus (CMV)
  • Mycoplasma
  • Molds/ Biotoxins

*In 2009, two highly accredited viral/cancer researchers, Dr. Frank Ruscetti and Dr. Judy Mikovits, had been investigating chronic fatigue syndrome/myalgic encephalomyelitis using a patient cohort selected by specialists and utilizing the precursor criteria (CCC) to the current ME criteria (ICC). They discovered a significant majority of these patients had an HIV like retrovirus in their blood. The virus was a human infectious type murine gamma leukemia retrovirus known to cause neurological/immunological illnesses, auto-immune illnesses, and cancers in mice. This group of viruses were slow replicating unlike HIV that fastly replicates. These researchers were able to isolate the virus from patients' blood.

Dr. Ruscetti and Dr. Mikovits became whistleblowers when their research discovered this type of virus in some vaccine samples. In addition, their research identified close contact family members having higher incidence of autism spectrum disorder (ASD) and ME. See our book section for two books by Dr. Judy A Mikovits and Kent Heckenlively that describe all the science behind the discovery of XMRV in ME/CFS-CCC, their explanation of what part of the original 2009 research study should have only been retracted, and why the 2 following studies were fraudulent including the use of Dr. Mikovits and her co-researcher Dr. Ruscetti. Dr. Mikovits went on to contribute as a co-author to the ICC criteria for myalgic encephalomyelitis and believes that ME is the proper name for the disease. They also documented the government science community’s attempts to silence them. This was the initial discovery that linked mouse retroviruses to disease in humans. Prior to the CFS-Fukuda criteria, a previous discovery in the early 1990s from viral researcher, Elaine DeFreitas, also found evidence of a different type of retrovirus in a CFS-Holmes cohort selected by specialists for immune dysfunction. 

Books:

Websites, Blogs, & Articles:

  • MEadvocacy.org -- MEadvocacy’s mission is to advocate for recognition, definition, & research for Myalgic Encephalomyelitis.
  • ME International -- "The purpose of ME (Myalgic Encephalomyelitis) International is to support ME organizations, educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, family and friends."
  • PlagueTheBook.com -- Judy Mikovits and Kent Heckenlively Website
  • Robyn's M.E., Retroviral informational Blog -- blog by Robyn Erland documenting the history of myalgic encephalomyelitis and the research of murine leukemia viruses (MLV) including xenotropic murine leukemia virus (XMRV), treatments, the connection to vaccines, and subsequent medical fraud.
  • ME - Myalgic Encephalomyelitis vs. Chronic Fatigue Syndrome - Facts Background Research -- book by Katharina Voss, edition 2017. Contains information of ME patients recovering with antiretroviral medicine and supplements. Provides links to studies of ME outbreaks and various associated research into immune dysregulation of ME patients.
  • Osler’s Web -- Includes a growing archive of exclusive magazine articles, book excerpts, interviews and essays about the developing research around ME, written and edited by Hillary Johnson. The "Eyeview" section is available via subscription.
  • Institute for Molecular Medicine -- President Founder Garth L. Nicolson, Ph.D., M.D. (H). “The mission of the Institute for Molecular Medicine is to contribute to the understanding of and the prevention and cure of catastrophic human chronic diseases, such as autoimmune diseases, fatigue illnesses, rheumatic diseases, cancer, AIDS, and infectious and genetic diseases. This will be accomplished through innovative basic and translational research programs.” This includes Gulf War Illness, Chronic Fatigue Illnesses, Autoimmune Illnesses, Infectious Disease, etc.
  • Social Security: Disability Rulings for ME and CFS -- US policy for evaluating disability for ME and CFS.
  • DxRevisionWatch   by Suzy Chapman - monitoring the development of the United States Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and International Classification of Diseases (ICD-11, ICD-10-CM), SNOMED CT and other classification and terminology systems as they pertain to post viral fatigue syndrome (PVFS), ME and CFS
  • CFIDS Disability Scale -- by David S. Bell, M.D., shared by OI Resource
  • CFIDS/ME Patient Memorial -- National CFIDS Foundation
  • CHRONIC FATIGUE SYNDROME BY NEWSWEEK STAFF ON 11/11/90
  • Marc Iverson's Letter of Resignation from CAA -- blog by Erica Verillo. CAA is the former name for Solve ME/CFS Initiative. The non-profit had gone through a rebranding process after it was made known on social media that it had taken large government grants, and then ran media campaigns at the direction of HHS/CDC whose content angered the patient community.
  • Relating to ME-- Myalgic Encephalomyelitis by Gabby Klein
  • Thoughts about M.E. -- Myalgic Encephalomyelitis (M.E.) Advocacy by Jeannette Burmeister
  • The Other Side of the Stretcher -- blog by Anne LiConti longtime ME advocate, RN
  • Twenty Years and Counting by Liz Willow
  • How disease names can stigmatize -- blog by Leonard A. Jason “Several individuals were even more critical in their reactions — suggesting that the Institute of Medicine-initiated name change effort represented another imperialistic US adventure, which began in 1988 when the Centers for Disease Control changed the illness name from myalgic encephalomyelitis (ME) to chronic fatigue syndrome. Patients and advocacy groups from around the world could perceive this latest effort to rename their illness as alienating, expansionistic, and exploitive.” - in regard to 2015 recommended new name of Systemic Exertion Intolerance Disease (SEID), that was not officially adopted by CDC due to patient community criticism
  • The IOM’s effort to dislodge chronic fatigue syndrome -- blog by Leonard A. Jason 
  • Institute for Molecular Medicine -- President Founder Garth L. Nicolson, Ph.D., M.D. (H). “The mission of the Institute for Molecular Medicine is to contribute to the understanding of and the prevention and cure of catastrophic human chronic diseases, such as autoimmune diseases, fatigue illnesses, rheumatic diseases, cancer, AIDS, and infectious and genetic diseases. This will be accomplished through innovative basic and translational research programs.” This includes Gulf War Illness, Chronic Fatigue Illnesses, Autoimmune Illnesses, Infectious Disease, etc.
  • HHV-6 Foundation
  • Doctors Find AIDS-Like Disease Without H.I.V. Virus Is Growing -- By Lawrence K. Altman July 22, 1992 New York Times archive
  • Information About ME and CFS from Paradigm Change -- summary of ME Medical Abnormalities in Peer-Reviewed Literature
  • Global Science - A Meta Analysis Approach to Activism -- info on the science of ME, CFS, Lyme, Fibromyalgia, Gulf War Illness, etc.
    • Anatomy of a Cover Up -- Neuroimmune diseases: “We may never unite or agree on how each disease should be defined, but one thing we should be uniting for is the corruption, fraud, human rights violations, and color of law abuse that accompanies each of these conditions.”
  • How to Get On -- a self-advocacy guide for anyone who is homebound or bedbound in the US with a focus on ME, CFS, Lyme, Fibromyalgia.
  • What is MTHFR? -- by MTHFR Support Australia

Social Media:

Hashtags

We also recommend using these hashtags when sharing on social media:

#May12CureCIND #MEadvocacy #MEICC #MyalgicE #PwME #ActUp4ME #PwME4ICC #MyalgicEncephalomyelitis #SevereME #OpportunisticInfections #ImmuneDeficiency #ImmuneSuppression #ResearchFraud #VaccineInjury #ReactivatedViruses #Science #HealthFascism #HealthFaucism #HealthFraud

Facebook

Twitter

  • @May12org -- Supporting #PwME #Lyme disease #VaccineInjury #GWI #PostSepsis *Complex Immunologic & Neurologic Diseases #ImmuneDeficiency #ReactivatedViruses #Science
  • @meadvocacy_org -- A project of http://May12.org - Recognition, Definition, & Research for Myalgic Encephalomyelitis #MyalgicE #MEICC #SevereME #PwME #MEadvocacy #PwME4ICC
  • @ME_Intl -- "The purpose of ME (Myalgic Encephalomyelitis) International is to support ME organizations, educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, family and friends."
  • @DrJudyAMikovits -- PhD Biomedical Research Scientist. Author of "Plague of Corruption" detailing how Anthony Fauci sabotaged my research to cover up the true causes of cancer.
  • @1anti_s -- Plague of Corruption. Kent Heckenlively -- Science teacher, attorney, Christian, and author. Concerned about animal tissue and aborted human fetal tissue in medical products.
  • @MARC_Inc0224 -- A 35-year quest to understand and treat chronic diseases in four fields: immunology, natural products chemistry, epigenetics, and HIV/AIDs drug development.
  • @Laykerq -- ME/cfsCuredByHAARTantiRETROvirals Biktarvy+Prezista+Norvir.Thanks Ruscetti+Mikovits 2009. 100%ProSaferVaccines. SocialMediaVictory. Lyme BUSTEDnBLASTED out of there.
  • @AngelaK11635746 -- Was @academicange. Retired sociologist. My family - homeless disabled, carers - suffering lethal endangerment from Redbridge Council.
  • @postersandme -- Advocacy, Art, Inspiration, reflection #MyalgicEncephalomyelitis #pwme

 Youtube

Research:

Prevalence of ME/CFS

Murine Leukemia Viruses:

Human Endogenous Retroviruses:

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome and the brain :

  • "These processes provoke central nervous system (CNS) activation in an attempt to restore immune homeostatsis. This model proposes that the antagonistic activities of the CNS response to peripheral inflammation, O&NS and chronic immune activation are responsible for the remitting-relapsing nature of ME/CFS. Leads for future research are suggested based on this neuro-immune model,"

Myalgic Encephalomyelitis and the body: 

 

Refer to MEadvocacy.org/Resources for a more extensive list of ME-ICC research and other important information. 

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