Resources

ME Diagnosis:

The following web forms from the Swiss Society for ME & CFS provide a printout indicating typical or atypical ME as defined by the International Consensus Criteria (ICC) to give your doctor.

International Consensus Criteria Questionnaire for patients over 18: "Do I fit the ICC?"

Summary Sheets:

*Note: The public may freely share these ICC Questionnaires and sheets created by MEadvocacy.org as long as the document is not altered, and MEadvocacy.org is credited.

Other Information:

International Consensus Criteria (ICC)

Canadian Consensus Criteria (CCC)

Ramsay Definition

  • Ramsay's Definition for M.E. -- 1986 M.E. diagnostic criteria based on epidemiological and other research that Dr. A. Melvin Ramsay investigated for over 30 years

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

Documentaries:

The following documentaries help bring awareness to severe ME:

Issues Covered by MEadvocacy:

(not an exhaustive list)

Books:

Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic - by Hillary Johnson (1997)

  • The definitive account of the history of government vs. ME. Details of the misdeeds and wrongdoings of the CDC. Patients have a long memory, and this is why they mistrust the HHS.

Authors of our own misfortune?: The problems with psychogenic explanations for physical illnesses - by Angela Kennedy (2012)

Nightingale Publications - Dr. Byron Hyde

  • Understanding Myalgic Encephalomyelitis (2019)
  • Missed Diagnoses Myalgic Encephalomyelitis & Chronic Fatigue Syndrome Second Edition (2011)
  • The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome - by Dr. Byron Hyde/Nightingale Research Foundation (1992)

ME and Post Viral Fatigue States: The Saga of Royal Free Disease - by Dr. A Melvin Ramsay (1988)
     No longer in print - copies sometimes found on eBay

Critiques on UK’s PACE Study:

Journal of Psychology PACE Trial Editorials online, free access: critiques on how PACE study in UK promotes ineffective and sometimes harmful cognitive behavioral therapy (CBT) and graduated physical therapy (GET) as treatments for CFS/ME using a poorly defined patient population that includes many that do not even have ME.

United States Websites:

May12.org -- Mission is to raise Global Awareness and Education for Complex Immunological and Neurological Diseases (CIND) including the following: Myalgic Encephalomyelitis – ME, Chronic Fatigue Syndrome - CFS, Chronic Lyme Disease - CLD, Gulf War Illness- GWI, Fibromyalgia - FM, Mold/Biotoxin illness and Multiple Chemical Sensitivity - MCS

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 1 million people in the U.S., and 17 million worldwide.” [Archived website]

M.E. Society of America -- The ME Society of America is a research-information website that was run by Maryann Spurgin Ph.D. until her retirement in 2007. In 2013 the website was archived and can no longer be found in a usual internet search. This statement appears on the Home Page of the Society's website:

“The M.E. Society of America is an organization that seeks to promote understanding of the disease known as myalgic encephalomyelitis (ME/CFS), a multi-system disease adversely affecting the cellular mitochondria and the heart, brain, neuroendocrine, immune, and circulatory systems. M.E. was first described in the 1950s following the recognition of many cases around the world, including a number of cases at the Royal Free Hospital in England. Many different viruses, bacteria, or toxins in combination with genetic factors may be involved in the etiology of the disease, which usually begins in childhood or early adulthood with an acute infection. Studying research-based subsets is the key to scientific progress in this area of investigation. In a number of publications, Dr. A. Melvin Ramsay outlined a definitional framework for M.E. that described abnormal muscle metabolism, circulatory impairment, and cerebral involvement.”  [Archived website]

Social Security: Disability Rulings for ME and CFS -- US policy for evaluating disability for ME and CFS

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.

International Websites:

Invest in ME Research (IiMER) -- A site whose mission is to change how ME is perceived and treated in the media and health professionals by focusing on education, lobbying, and seeking funding for ME biomedical research. [UK - United Kingdom]

Hummingbird Foundation -- The site includes:

1) Information on how to test for and treat ME, and understand the symptoms, history, and cause of ME.

2) Many different resources for patients, their friends and families, and for doctors and other medical staff. [Canada]

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."

Stonebird -- This website shares the experience of living with Very Severe ME from both the patient and carer’s perspective. [UK]

Tymes Trust -- This is a respected UK charity that helps children and young people with ME and their families.[UK]

The 25% ME Group -- This is a charitable UK organization that exists to support those that have the severe form of ME, which includes housebound, bedbound and wheelchair users. [UK]

Blogs about ME:

Other Blogs:

Social Media:

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Twitter

Hashtags

  • We also recommend using these hashtags when sharing on social media: #MEadvocacy #MEICC #MyalgicE #PwME #ActUp4ME #PwME4ICC #MyalgicEncephalomyelitis #SevereME #ReactivatedViruses #OpportunisticInfections #ImmuneDeficiency #ResearchFraud

 

 

 

 

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Disclaimer: Always seek the advice of a Medical Professional before deciding the right treatment option for you or your child. Any advice given is for educational and informational purposes only, and should not be considered medical, legal or financial advice. This website is for information only.