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More Coverage--Millions Missing-ME/CFS Patients take to the streets

Justin30

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http://www.medpagetoday.com/Neurology/GeneralNeurology/58241

Looks like info on Millions Missing

WASHINGTON -- The chronic fatigue syndrome community demanded stronger investment in scientific research, and greater accountability from public agencies to address their illness, at the recent "Millions Missing: A Global Day of Protest for ME/CFS."

Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME/CFS), and the protesters emphasized that their community has been ignored for decades.
 

*GG*

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WASHINGTON -- The chronic fatigue syndrome community demanded stronger investment in scientific research, and greater accountability from public agencies to address their illness, at the recent "Millions Missing: A Global Day of Protest for ME/CFS."

Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME/CFS), and the protesters emphasized that their community has been ignored for decades.

Millions Missing is dedicated to the millions of [ME/CFS] patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease," the protest organizers posted on a website. "At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness."

The event took place in seven U.S. cities, including Atlanta, Dallas, Seattle, San Francisco, and Raleigh, N.C., as well as in London and Melbourne. In-person attendees laid out dozens of empty shoes to symbolize the 1.5 to 2 million people in the U.S. who they say have been largely absent from their own lives because of their illness.

"Clearly, if everyone knew just how many people were sick, and how many people were suffering, there would be a much stronger outcry for funding, and for medical care, and for attention than we have now ... The problem is that people just don't know, because so many of us are stuck in our homes and bedrooms," said MEAction co-founder Jennifer Brea, a filmmaker and patient with ME/CFS, who attended one of the events, to MedPage Today in a phone interview. MEAction is a global online platform for connecting ME/CFS patients.

A Call for Change

Only about 15% of patients with ME/CFS are accurately diagnosed, according to Nancy Klimas, MD, director of the Institute for Neuro Immune Medicine at Nova Southeastern University in Ft. Lauderdale, Fla.

cont'd

http://www.medpagetoday.com/Neurology/GeneralNeurology/58241
 

Sasha

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Interesting:

MedPage said:
Brea told MedPage Today that protesters in Boston and San Francisco met with HHS officials, and that a meeting has been promised with Karen DeSalvo, MD, MPH, acting assistant secretary of health. "But that might take months to schedule," Brea acknowledged.

A meeting at the CDC with Atlanta-based advocates is also in the works.
Excellent article.