• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Science Mag News Brief Followup to #MEAction

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
The print version of Science 21 Aug 2015 features a followup to the excellent online article cited by @Bob
last week on another thread.

It's up front in the "News Section" under "Around the World" & nicely summarizes the longer online piece.Readership is estimated at over a half a million including members of the American Association for the Advancement of Science. Very nice work Jen Brea!!!!

Washington, D.C.

Push for chronic fatigue research
Patient advocates and scientists joined forces this week to boost research funding for the mysterious and debilitating disease chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). In an open letter to U.S. senators, the group, #MEAction, noted that ME/CFS affects an estimated 836,000 to 2.5 million people in the United States, and stated that research into treatments should be “proportional to and commensurate with other diseases with similar patient populations.” Through changes to an authorizing bill for the National Institutes of Health (NIH), the group aims to increase research funds available for ME/CFS from $5.4 million to levels similar to diseases that cause comparable disability, such as multiple sclerosis. It also wants to transfer responsibility for the disease from an isolated office within the U.S. Department of Health and Human Services to the National Institute for Neurological Disorders, a part of NIH. http://scim.ag/_MEAction
 
Messages
37
"The print version of Science 21 Aug 2015 features a followup to the excellent online article cited by @@Bob
last week on another thread."

I couldn't find the followup; could you provide a link? Thanks!
 

waiting

Senior Member
Messages
463
Excellent!

On a related matter, that of the language used to describe ME in the media (and research studies), in another PR thread, members have mentioned how the word "controversial" is often used as a descriptor. Here, the descriptor is "mysterious", also commonly seen.

Lots of diseases have unknown etiology, no cure, etc., but are not described as either mysterious or controversial. Both *seem* to ascribe a value judgement to the disease (that it's not real).