COVID-19 and Long haul COVID Resources

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Reports & Fact Sheets

Learn about ME. Find educational tools for your advocacy.


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.

  • PACE briefing, Science for ME, 2018
  • Primer: Post-Exertional Malaise (PEM) and GET in ME/CFS, S. Eyssens, 2017
  • Clinical Guidance for ME: “Evidence Based” Guidance Gone Awry, Mary Dimmock, 2018
  • Letter opposing GET for healthcare providers, Workwell Foundation, May 2018
  • Critique of child separation due to ME in the UK, Tymes Trust, 2014
US-specific  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


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

 


Fact Sheets 
UNITED STATES

#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