Advocacy Archives

21st Century Cures Act Passes House with Overwhelming Bipartisan Support

December 11, 2016 1 Comment

21st Century Cures Act Passes House with Overwhelming Bipartisan Support ME/CFS advocates have been eagerly awaiting passage of the 21st Century Cures Act since it was initially introduced in 2013, given it was originally written to increase NIH funding and fast-track research and treatment development. On Wednesday, November 30, a compromise bill with modified provisions from the original 21st Century Cures Act swept the House… READ MORE

#MillionMissing Activists Meet with HHS for Follow-Up

December 2, 2016 3 Comments

As reported in the August 5 update on the meeting between HHS and advocates for ME on August 1, Assistant Secretary of Health Dr. Karen DeSalvo had committed to follow up on specific actions and meet again in October. On October 24, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met again

#MEAction US protest demands

November 30, 2016 4 Comments

These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care. You can access and download a pdf of the revised protest demands by clicking

ME activist calls on NIH to "get back to science" at Shorter Talk

November 14, 2016 12 Comments

M.E. denier, Edward Shorter, called CFS the modern version of hysteria in a presentation chronicling the history of 19th century hysteria before approximately 20 people at the National Institute of Health (NIH) on Nov. 9th. Shorter is a professor of the history of medicine at the University of Toronto. In his presentation, Shorter showed a

Shorter invited to NIH to share perspective of disease denialism

November 4, 2016 13 Comments

On Thursday, November 3, Dr. Maureen Hanson shared a screenshot revealing a planned talk on November 9th at the NIH by the historian Dr. Edward Shorter titled “Chronic Fatigue Syndrome in Historical Perspective.” Dr. Shorter has a long history of treating patients with ME with disdain and denial, as illustrated in an article he wrote for

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

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

Canada: Research Reviewers as Disease Denialists

September 5, 2016 5 Comments

Press Release Toronto – August 28, 2016 – “This is ludicrous!” writes Dr. Ian Hyams about the Canadian Institute of Health Research (CIHR) decision to deny funding for a networking grant for the neurological disease Myalgic Encephalomyelitis (ME). Dr. Hyams, Medical Director of the Chronic Pain and Fatigue Clinic, expressed further concern stating that “the

Canada: officials turn down grant app because CFS "isn't real"

August 26, 2016 51 Comments

For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The IMHA [the Institute of Musculoskeletal Health and Arthritis] has committed to supporting the creation of a national network for translational research in ME/CFS in 2016-2017. This network will facilitate capacity building and provide a forum to

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