250 Million Ask for ME/CFS Makes It Into Major Science Journal


Founder of Health Rising and Phoenix Rising
Staff member
We have another friend in the media. A couple of days ago Emily Underwood wrote an article in Science Insider on the $250 million dollar ask researchers made for ME/CFS. They rejected the idea that researchers weren't interested in this disease and they did that by having researchers sign onto a letter to the NIH.
Lobbyists seek new funds for chronic fatigue syndrome research

Emily is a staff writer at Science.

Patient advocates and scientists joined forces today in a new campaign to boost research funding for the mysterious and debilitating disease chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). The group aims to increase research funds available for ME/CFS from the $5.4 million annually available today. It also wants to transfer responsibility for the disease from an isolated office within the U.S. Department of Health and Human Services (HHS) to the National Institute for Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH).

The coalition hopes to engineer the changes by inserting language into an authorizing bill expected to be introduced in the U.S. Senate; it would be a companion to the 21st Century Cures bill that has already passed the U.S. House of Representatives. That bill aims to speed the development of new medical treatments by streamlining regulations and boosting funding for NIH

“We really need NIH to fund research in this area—there are a lot of critically ill patients,” says Ronald Davis, a biochemist and geneticist at Stanford University in Palo Alto, California, and one of the signatories in an open letter to U.S. senators affirming the need for more ME/CFS funding. Estimated to affect between 836,000 and 2.5 million people in the United States, ME/CFS in its severe forms can make it impossible for people leave the house or get out of bed, he says. The groups seeks funding comparable to illnesses with similar patient numbers and cost to society. As examples, they cite multiple sclerosis, which was designated $103 million in fiscal year 2015, and HIV/AIDS, which received $3 billion in fiscal year 2015 research funding.

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