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Reports & Fact Sheets

Learn about ME. Find educational tools for your advocacy.


Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.

It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME. Learn more.


Reports on Graded Exercise Therapy

Thousands of patients have reported harm from Graded Exercise Therapy (GET), and the focus on exercise continues to distract governments from pursuing effective treatments.

  • Opposition to Graded Exercise Therapy (GET) for ME/CFS, letter to healthcare providers, Workwell Foundation, May 2018
  • PACE briefing, Science for ME, 2018
  • Primer: Post-Exertional Malaise (PEM) and Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), S. Eyssens, 2017
  • Clinical Guidance for ME: “Evidence Based” Guidance Gone Awry, Mary Dimmock, 2018

Science

Myalgic Encephalomyelitis is a multi-system disease. Research continues to show metabolic dysfunctions, neurological inflammation, systemic inflammation,  immunodeficiency, autoimmunity and an altered microbiome in people with ME.

#MEAction ME/CFS Research Summary – Full Summary

#MEAction ME/CFS Research Summary – Highlights


Diagnostic Criteria

It is imperative that both clinicians and researchers use an accurate diagnosis criteria for ME/CFS in order not to become a catch basin for any patient reporting “fatigue.”

Canadian Consensus Criteria | International Consensus Criteria

IACFS/ME Clinical Care primer | Pediatric Primer


IOM Report

The Institute of Medicine released a report on ME/CFS in which a panel of experts reviewed over 9,000 separate studies. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” is an excellent summary of the research. Also searchable for information on a specific topic.
Report brief  |  Guide for Clinicians
Fact sheet  |  Full report

 


 

UNITED STATES

Reports

Disease burden of ME/CFS – based on research paper by Dimmock, Mirin & Jason

Prevalence spreadsheet that shows the number of people in your state with ME


Fact Sheets 

#MEAction Congressional Fact Sheet – Facts about ME/CFS to present to your representatives

Talking points on ME with sources

Fact Sheet about ME from #MillionsMissing

 


UNITED KINGDOM

UK Fact Sheet

Fact Sheet about ME from #MillionsMissing

Scottish Good Practice Statement on ME-CFS – this set of guidelines informs doctors of the potential adverse effects of graded exercise and the use of cognitive behavioral therapy not as a cure but as a coping tool, similar to other chronic illnesses.


AUSTRALIA

Australia Fact Sheet