United States Archives

NIH Director: Our Judge and Jury, Prison Guard and Executioner

June 26, 2018 No Comments

An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome. *Note, an anonymous person gave this testimony. #MEAction has published it but did not

Mother Shares Heartbreaking Testimony about Sons with Severe ME

June 25, 2018 15 Comments

This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and one day before ME devastated

U.S. – Center for Solutions for ME/CFS Seeks Applicants for Community Advisory Committee

June 22, 2018 No Comments

The Center for Solutions for ME/CFS is seeking applications for the Community Advisory Committee. The deadline is Monday, July 9. Apply here: CAC application, available in Google Forms. The Center for Solutions for ME/CFS (CfS for ME/CFS) is a multi-institutional, inter-disciplinary research center dedicated to understanding the biology of ME/CFS, and developing diagnostic tests and methods for

Clarification about our Senate Resolution for ME/CFS

June 20, 2018 2 Comments

This is a letter to the community from #MEAction, Solve ME/CFS, and MassCFIDS about our recent U.S. congressional work. Dear Friends, We want to clarify an important issue about our recent advocacy work. After two years of fierce advocacy by our community, we are thrilled that Senator Ed Markey of Massachusetts has now introduced a

US: Watch the CFS Advisory meeting – this Wed. and Thurs.

June 19, 2018 No Comments

Representatives from across federal agencies will convene for the next two days – tomorrow, June 20th and June 21st – for the bi-annual Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. CFSAC is an important committee that provides advice and recommendations to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis

U.S. House of Rep. Supports More Funding for NIH

June 18, 2018 No Comments

We applaud the U.S. House of Representatives for its support to increase funding for the National Institutes of Health (NIH). Last week, the House Appropriations Committee released its draft funding bill that raises spending for the NIH by $1.25 billion (3 percent) to $38.3 billion in 2019. Year-by-year, the NIH budget increases, and, year-by-year, the NIH fails to address

PBS Audience Award: Vote for Unrest

June 18, 2018 11 Comments

We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for this award– after all, this

Make yourself Heard before U.S. Health Officials – Submit your Comment to CFSAC by June 13

June 6, 2018 3 Comments

You showed up for #MillionsMissing, now is the time to show up before our federal agencies to demand that they take urgent and strategic action for people with Myalgic Encephalomyelitis. The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold its bi-annual meeting on June 20th and 21st, and we need to fill up the time

Victory for ME Disability Claim – U.S. Court Upholds Plaintiff's Lawsuit After Being Denied Disability

June 4, 2018 7 Comments

Former Washington Post science reporter, Brian Vastag, won a federal lawsuit against Prudential Insurance after the insurance company dropped his short-term disability benefits and denied his bid for long-term ones.
Vastag’s lawyers said that the ruling should make it harder for insurers to deny benefits to similar cases in the future.

U.S. Votes to Track ME/CFS on BRFSS Survey

May 26, 2018 5 Comments

Back in March, we urged you to take action and inform your state health officials and departments to begin tracking ME/CFS as part of the their annually-conducted Behavioral Risk Factor Surveillance System (BRFSS). Many chronic health conditions are tracked using this system. State health departments use the data collected to plan health projects and allocate resources; national

Category: United States