CDC Archives

#MillionsMissing Meets With Government Officials

June 6, 2016 5 Comments

In late May, protesters all over the world met with their government representatives to discuss the #MillionsMissing demands: better research funding, better physician training, and government oversight for ME/CFS. In Washington, DC, nine #MillionsMissing protesters met with 17 U.S. Congressional offices: Senator McCain (AZ-R) Lindsey Graham (SC-R) Dianne Feinstein (CA-D) Tammy Baldwin (WI-D) Cory Booker

CFS Advisory Committee Meets

May 22, 2016 1 Comment

The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time.

#MEAction meets with Senate staffers

March 16, 2016 No Comments

This week #MEAction, in collaboration with Solve ME/CFS and USAWG, conducted advocacy efforts with members of Congress to make two key requests for the benefit of greater ME/CFS medical research funding. Senators were asked to support a letter to NIH Director Francis Collins requesting that an equitable share of the $2 billion increase in fiscal

CDC Grand Rounds on ME/CFS Tuesday

February 14, 2016 No Comments

ME/CFS is going to be the topic for CDC’s monthly Grand Rounds this Tuesday at 1 pm ET. The title of the session is “Chronic Fatigue Syndrome: Advancing Research and Clinical Education.” The presenters will be Anthony Komaroff (Harvard Medical Center), Elizabeth Unger (Chief of CDC’s Chronic Viral Diseases Branch), Charles Lapp (Hunter-Hopkins Center, P.A.), and Avindra

Response to AHRQ's continued support of PACE

February 4, 2016 2 Comments

On February 3, 2016, a group of patient organizations and advocates (including #MEAction) sent a followup letter to the Agency for Healthcare Research and Quality (AHRQ) further detailing concerns with the 2015 AHRQ Evidence Review and reiterating their request, originally made in November 2015, to reanalyze the conclusions of AHRQ’s Evidence Review in light of

Solve ME/CFS Initiative Grades HHS on CFSAC Response

January 22, 2016 No Comments

Solve ME/CFS Initiative Grades HHS on CFSAC Response The Solve ME/CFS Initiative has created a report card for HHS’ response to the recommendations made by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) after its August meeting. The grades the organization gave on the HHS response to the 13 CFSAC recommendations range from A- (one) to F (four).

Petition: Investigate PACE, remove CBT and GET from treatment guidelines

November 24, 2015 4 Comments

#MEAction has just launched a major new petition to get the US Department of Health and Human Services (HHS) to throw its considerable weight behind calls to The Lancet to have the notorious PACE trial independently re-analysed. The petition also asks the HHS to take immediate steps to protect ME/CFS patients both in the US

Call for HHS to Investigate PACE

November 16, 2015 No Comments

Call for HHS to Investigate PACE Recently, journalist David Tuller, DrPH, published an investigative report outlining serious concerns with the conduct, analyses, and results of U.K.’s £5 million PACE trial for chronic fatigue syndrome. PACE investigated the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) Since then, other researchers and journalists have

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