Myalgic Encephalomyelitis - A Disease Looking for Respect

RDR Staff
Published Online: Tuesday, Mar 05, 2013

Myalgic encephalomyelitis (ME) is a condition with unknown origin and unclear treatment options. Widespread inflammation and multisystemic neuropathology seem to be at the core of its pathophysiology.

ME is also commonly referred to as chronic fatigue syndrome but advocates for the condition prefer the ME nomenclature. Chronic fatigue syndrome has been often misused and/or over-diagnosed in the past so it is currently unclear if ME is a rare condition. A recent prevalence study (Vincent et al 2012)  had the estimated number of patients in the U.S. at around the 200,000 mark but more studies are needed to ascertain its true prevalence.

In this interview with Rare Disease Report, patient - and patient advocate - Charlotte von Salis describes ME and the need for more awareness and funding for this condition.

For more information about this ME, visit www.name-us.org

Reference

Vincent A, Brimmer DJ, Whipple MO, et al. Prevalence, incidence, and classification of chronic fatigue syndrome in Olmsted Country, Minnesota, as estimated using the Rochester epidemiology project. Mayo Clinic Proc.2012; 87(12):1145-52

Related Articles
A global competition to award rare disease research has been announced by the Rare Genomics Institute (RGI). The BeHEARD (Helping Empower and Accelerate Research Discoveries) challenge is a global competition to award rare diseases research accomplishments.
To help kick off the 2-day meeting, there will also be an appreciation dinner on March 15th at the Yards Brewing Company.
On March 3rd, there is an opportunity for people to donate to 1 of over 80 non-profit rare disease organizations with ‘Give RARE’.
This morning, I received an email from Melissa Hogan asking me to post an article she wrote about the reason she was unable to be in Washington this week.
Other News
External Resources

MJH Associates
AJMC
Cure
HCPLive
OncLive
Pharmacy Times
Specialty Pharmacy Times
Physicians' Education Resource
Internal Resources

Medicine
Advocacy
Business/Regulratory
Events
Conferences
Connect With Us:

About Us
Advertise
Sponsor
Terms and Conditions
Privacy Policy
Contact Us
Intellisphere, LLC
666 Plainsboro Road
Building 300
Plainsboro, NJ 08536
P: 609-716-7777
F: 609-716-4747

Copyright Rare Disease Report 2015
Intellisphere, LLC. All Rights Reserved.