United States Archives

Director Collins responds to 55 Congressional Representatives' Letter of Concern

October 17, 2016 1 Comment

Recently, #MEAction in conjunction with other advocacy organizations and many individual advocates have also successfully lobbied Congressional members to achieve: Favorable language to ME in the FY 2016 House appropriations report; Congressional tweets of support for the #MillionsMissing Day of Action on Sept. 27, 2016, which called attention to the millions of Americans struck down by

Increasing Efficacy of the CDC’s ME/CFS Educational Program

October 13, 2016 4 Comments

INTRODUCTION The Centers for Disease Control (CDC) is revising and creating new educational materials for its Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) educational program. The hope is that this fourth try at producing ME/CFS educational materials will result in equality of care for ME/CFS patients and they will, for the first time, experience appropriate care throughout

Fiscal Year 2016 Request for Applications Tally

October 12, 2016 1 Comment

Despite advocates’ expectations, Fiscal Year 2016 ended with no RFAs issued for ME research.

SPEECHES FROM THE FRONT LINES OF #MILLIONSMISSING: TASHA & ZARA

October 11, 2016 1 Comment

FROM THE FRONT LINES OF #MILLIONSMISSING ROUND 2: SPEECHES BY TASHA AND HER DAUGHTER ZARA (AT NYC PROTEST)

Attend the IACFS/ME conference this month

October 10, 2016 No Comments

Where does rituximab fit in among the treatment options for ME/CFS? What is the US government’s research plan? How can I increase the chances my disability application will be or continue to be approved? What medications can I try for fibromyalgia now that morphine and related prescriptions are restricted? Come to our international scientific

US: #MillionsMissing Protest Demands

September 22, 2016 7 Comments

Overview Ahead of the May 2016 #MillionsMissing protests, members of the US protest steering committee drafted a set of demands to the US government relating to research and medical treatment for ME. After the protest, we solicited broader community feedback via an online survey, which was completed by 191 respondents. The survey demonstrated overwhelming support

Join the MILLIONSMISSING Chicago Protest/Day of Action

September 20, 2016 No Comments

The Chicago protest #MillionsMissing will feature talks by Dr. Leonard Jason, Dr. Marcie Zinn, well-known epidemiologists; Carol Head, of Solve ME/CFS; Barbara Morrison; ME/CFS patients; and families and friends. It will take place at the James Thompson Center, 100 W. Randolph St, Chicago between 11:30am-12:30pm. Please click below to attend, learn more and donate to

Join the NYC #MillionsMissing Protest

September 14, 2016 No Comments

The NYC #MillionsMissing Protest has a full agenda and they are excited to announce several major speakers in attendance including local NYC ME/CFS physician (and Chair of the Chronic Fatigue Syndrome Advisory Committee), Dr. Susan Levine. In addition, local physician-scientist Dr. Mady Hornig from the Columbia University Center for Infection and Immunity (and the ME/CFS Microbe Discovery Project) will also be in attendance. NYC will also have several patients and caregivers tell their personal stories. If you plan to attend and would like to share your story at the protest, please contact them. Finally, as opposed to the shoe display used at other locations, NYC will be doing a unique display using balloons and posters.

Dozens of US representatives support letter to NIH for ME/CFS research

September 9, 2016 14 Comments

A total of 55 members of Congress have signed on to a letter asking NIH Director Francis Collins: 1) to consider in a timely manner the input received through the NIH Request for Information, and 2) to update Congress on the NIH’s plans for ME/CFS research through 2018. The letter was co-sponsored by Rep. Zoe

Bateman Horne Center Announces New, Larger Location

September 9, 2016 No Comments

Bateman Horne Center has moved into a new, larger facility; plans to expand staff to accommodate increasing numbers of patients, will increase research enrollment, and is expanding patient and provider education efforts.

Category: United States