What is ME ?

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Picture Credit: @IrishMECFSAssoc

Myalgic Encephalomyelitis (ME), sometimes misleadingly called chronic fatigue syndrome, and referred to as ME/CFS by U.S. federal agencies is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It is also sometimes referred to as Systemic Exercise Intolerance Disease (SEID). Lack of an understanding of the precise cause of the disease contributes to confusion about the name.

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. Research 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. We know of no experts in ME in Colorado, but some patients have found doctors who recognize the disease and treat their symptoms. 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.

Sometimes this disease is still called chronic fatigue syndrome, a  name assigned decades ago that does not reflect the seriousness of this debilitating illness. This has contributed to the lack of urgency  from our government and the medical community and lack of recognition from the general population.

How Many People have ME ?      

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In Colorado, ME affects between 16 and 42 thousand. About 13 million people worldwide live with ME, Between about 1 and 2.5 million are Americans. [1]

How Bad is it?

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.[2]

Who is  MEAction Colorado?

We are a grassroots, volunteer group of Colorado #pwme, caregivers and allies. We are associated with the MEAction Global Network, who are a great resource for information about the disease.

Our goals are

  • Raise awareness of this little understood disease.
  • Work for funding for research to find diagnostic test, treatment and a cure.

What about Research Funding?

The NIH spends only $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.[3]

ROI for ME research is estimate at greater than 100%.

ME patients present with symptoms identical to those of Gulf War Syndrome.[4] Research for ME would benefit Gulf War veterans as well.

For more information visit MEAction Global.

 

[1] Estimated from CDC figures: 
[2] Colorado burden of $286,482,139 to $404,445,084, estimated from NIH figures: 
[3] NIH funding
[4] Dr. Nancy Klimas. CFSknowledgecenter.com