For our meetings with staffers from our Senator’s offices we prepared single page fact sheets to include the most important facts about ME in Colorado in a concise format. You may find these useful when you are explaining ME to friends, family or strangers.
What is ME ?
- Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue syndrome (CFS) or ME/CFS, is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
- ME affects all ages and all races and is more prevalent in women.
- ME has no known cause, no diagnostic tests, no FDA approved treatments and is minimally funded by the NIH.
- Because it is a part of the curriculum in only a third of medical schools in the country, there are very few doctors who know the disease. Symptoms are often dismissed as it is difficult to diagnose.
- Patients wait years to get a diagnosis. Even then, medical care for the symptoms is hard to get as treatment options are limited.
- About 13 million people worldwide live with ME, Between about 1 and 2.5 million are Americans. In Colorado, ME affects between 16 and 42 thousand.
- About 75% of people with ME are unable to go to work or school. About 25% are homebound or bedbound due to severe symptoms.
- The economic burden in Colorado is estimated to be between $286 and $404 million.
Goals of MEAction Global Network and MEAction Colorado
- Raise awareness of this little understood disease.
- Work for funding for research to find diagnostic test, treatment and a cure.
- The NIH spends $14 million per year. For comparison, MS is funded at $115 million and is half as common and has less effect on quality of life.
- ROI for ME research is estimate at greater than 100%.
- ME patients present with symptoms identical to those of Gulf War Syndrome. Research for ME would benefit Gulf War veterans as well.
Senate Resolution 508
- The resolution is being carried by Sen. Ed Markey D-MA. It was introduced on May 15th and referred to the Committee on Health, Education, Labor, and Pensions.
- We are working to add more cosponsors to the resolution.
- Because of his prominence in the Senate, Senator Gardner’s support would go a long way in helping to raise awareness of ME, an important first step in improving responsiveness of the medical community and a sense of urgency at the NIH. We are here to ask Senator Gardner to cosponsor this resolution.
 Colorado burden of $286,482,139 to $404,445,084, estimated from NIH figures: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/
 Dr. Nancy Klimas, Director, Institute for Neuro Immune Medicine, Nova Southeastern University,CFSknowledgecenter.com
Here’s a printable PDF copy;