- International Consensus Criteria Questionnaire for patients over 18: “Do I fit the ICC?”*
- Simple ME Fact Sheet*
- Brief ME History*
- "What is ME" handout* (2 per sheet printed front and back)
- "What is ME" business card* (10 per sheet)
- ME Science Links* -- published studies on myalgic encephalomyelitis
- Chart comparing ME International Consensus Criteria (ICC) and United States IOM Report (SEID)*
- Important ME Quotes*
- ME Video Links*
- Example of May 12 Proclamation for ME Awareness Day -- brief instruction on how to request a May 12 awareness day proclamation. MEadvocacy.org members may use this as a template.
*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.
International Consensus Criteria (ICC)
- Myalgic encephalomyelitis: International Consensus Criteria -- 2011 research and clinical definition improving on the Canadian Consensus Criteria and distinguishing ME from CFS
ME International Consensus Primer for Clinical Practitioners -- how to understand, diagnose and manage the symptoms of ME. This primer is superior to information on the CDC website
- See translations of the IC Primer here.
Canadian Consensus Criteria (CCC)
- A short summary of Canadian Consensus Criteria - Clinical and Case Definition for ME (2003) -- towards the bottom of the page
- A Clinical Case Definition and Guidelines for Medical Practitioners (2005)
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
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
The following documentaries help bring awareness to severe ME:
What About M.E.? - trailer for the documentary released 2016
- What About M.E.? Film - Facebook page
- What About M.E.? MOVIE available at Amazon
- Invisible Illness - Stories of Chronic Fatigue Syndrome - 11-minute mini-documentary produced by Palo Alto Online, featuring severe ME patient Whitney Dafoe, and his father, ME researcher, Ron Davis
Voices from the Shadows - trailer (2011)
- Voices from the Shadows full documentary - available on Vimeo
- Watch FOR FREE using the code "VOICES"
Issues Covered by MEadvocacy:
(not an exhaustive list)
- MEadvocacy Comments Rejecting ICD-10-CM Proposal Changes for CFS and ME and the Addition of SEID
- NIH Sidesteps Critical Problems with the ME/CFS Study
- Systemic Bias Continues at NIH
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.
- http://journals.sagepub.com/toc/hpqa/22/9 - this links to all the articles about PACE
MEadvocacy Blog on PACE
- 19 November 2015 - Tell HHS to Remove Flawed Pace Recommendations from Clinical Guidelines
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.
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:
- MEadvocacy -- Blog Index
- Thoughts about M.E. -- Myalgic Encephalomyelitis (M.E.) Advocacy by Jeannette Burmeister
- Relating to ME-- Myalgic Encephalomyelitis by Gabby Klein
- Twenty Years and Counting by Liz Willow
- The Other Side of the Stretcher by Anne LiConti
- A Life Hidden by Naomi Whittinghill - Severe ME
- Shout Out About Me by Russell Logan
- Slightly Alive by Mary Schweitzer -- diagnosed with ME and other immune dysfunction, ampligen responder, long time advocate and witness to the political history of CFS
Paradigm Change by Lisa Petrison, Ph.D -- an excellent resource for understanding mold
- Information About ME and CFS from Paradigm Change -- summary of ME Medical Abnormalities in Peer-Reviewed Literature
- Lyme Disease Canada: Uncovering the Politicization of Lyme Disease/Tick Bite Post Sepsis RJ James -- info on the science of ME, CFS, Lyme, Fibromyalgia, Gulf War Illness, etc.
- 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.
- We also recommend using these hashtags when sharing on social media: #MEadvocacy #MEICC #MyalgicE #PwME #ActUp4ME #PwME4ICC #MyalgicEncephalomyelitis #SevereME #ReactivatedViruses #OpportunisticInfections #ImmuneDeficiency #ResearchFraud