Solve ME/CFS Initiative President Carol Head traveled to Washington, D.C., March 7 for a series of meetings with staff from the National Institutes of Health and congressional offices.
Head kicked off the trip with a meeting at NIH on March 8. She was accompanied by fellow advocate Mary Dimmock, mother of an ME/CFS patient and author of “Thirty Years of Disdain: How HHS and a Group of Psychiatrists Buried Myalgic Encephalomyelitis.” The two met with Walter Koroshetz, Director of the National Institutes of Neurological Disorders and Stroke, Vicky Holets Whittemore, NIH Program Director and Coordinator of the Trans-NIH ME/CFS Working Group, and Marian Emr, Communications Director for NINDS.
Head and Dimmock raised concerns over the staffing of the new intramural NIH study on ME/CFS, which includes Dr. Brian Walitt, who has made previous public comments about his belief that ME/CFS and fibromyalgia are psychosomatic. In a teleconference with a group of patient advocates later that day, Dr. Walitt stated that he does believe that ME/CFS is a biological disorder. They also learned about plans for a consortia of extramural investigators.
The remainder of the trip focused on visits with congressional offices, particularly those of Senators who serve both on the Health, Education, Labor & Pensions Committee, as well as on the Appropriations Committee.
On March 9, Head and Solve ME/CFS Initiative Board member Chris Williams met with staff at the offices of Rep. Van Hollen (D-MD). Williams, herself a patient, is a constituent of Van Hollen’s. Van Hollen is believed to be the most likely candidate to assume the office that Sen. Barbara Mikulski (D-MD) will vacate when she retires from Congress this year. Head and Williams were accompanied by two patient constituents, Loetta Vann and Greg Burge, who testified to their personal struggle with ME/CFS.
Later that afternoon, Head and Williams met with Stephen Steigleder, the House minority staff member who handles NIH and the Centers for Disease Control and Prevention. They conveyed the urgent need for dramatically more research funding. Head and Williams then met with Health Legislative Analysts at the office of Sen. Patty Murray (D-WA), ranking member of the Senate Committee on Health, Education, Labor & Pensions. Head was joined by phone in the meeting with Sen. Murray’s constituent and ME/CFS patient Elaine Boel, who was recommended by #MEAction. Head provided background on the disease, while Boel conveyed her personal account of what it had done to her life. Head then asked that Sen. Murray do the following:
1. Support a letter to NIH Director Francis Collins requesting that an equitable share of the $2 billion increase in FY16 NIH funding be used to fund ME/CFS research.
2. Include the following recommendations in the 2017 Appropriations Report language:
-NIH to make a set of investments to spur ME/CFS research and drug development;
-The Centers for Disease Control and Prevention to reinstate and increase CDC funding and conduct a broad-based medical education campaign leveraging recommendations of the IOM and of the Chronic Fatigue Syndrome Advisory Committee; and
-The Department of Health and Human Services to identify ways to creatively fund Centers of Excellence that include a clinical care component.
These requests and supporting documentation were developed in conjunction with the Congress subgroup of the U.S. Action Working Group, which included input from many knowledgeable ME/CFS patient advocates.
On March 9, Head held meetings with the staff members of five Senators, where she and the constituents reiterated these requests. Head met with:
- Sen. Mark Kirk (R-IL), a member of both the Senate Appropriations Committee and the Health, Education, Labor & Pension Committee. She was joined by phone by Solve ME/CFS Initiative Board chair Vicki Boies, who is a constituent of Sen. Kirk’s.
- Sen. Bill Cassidy, MD (R-LA), a member of both the Senate Appropriations Committee and the Health, Education, Labor & Pensions Committee. Head was joined by phone by Sen. Cassidy’s constituent and ME/CFS patient Matt Wray, who was recommended by #MEAction, and advocate Mary Dimmock.
- Sen. Tammy Baldwin (D-WI), a member of both the Senate Appropriations Committee and the Health, Education, Labor & Pensions Committee. Head was joined by phone by Pat Fero, Sen. Baldwin’s constituent and president of the Wisconsin ME/CFS Association, and advocate Mary Dimmock.
- Sen. Lamar Alexander (R-TN), a member of the Senate Appropriations Committee and Chairman of the Health, Education, Labor & Pensions Committee. Head was joined in person for the meeting by Sen. Alexander’s constituent and ME/CFS patient Ashley Hultman, Charmian Proskauer,Leah Williams, whose daughter and son both have ME/CFS, and advocate Mary Dimmock.
- Sen. Elizabeth Warren (D-MA), a member of the Health, Education Labor & Pensions Committee. Charmian Proskauer, Sen. Warren’s constituent and President of the Massachusetts CFIDS/ME & FM Association, led the meeting, which also included Sen. Warren’s constituent Leah Williams and Sen. Alexander’s constituent Ashley Hultman.
Earlier in the afternoon, Head, Proskauer, Williams and Dimmock met with two additional Appropriations staff members:
-Laura Friedel, Senate Majority, who handles NIH; and
-Lisa Bernhardt, Senate Minority, who handles CDC.
The Appropriations Committee staff members were helpful in suggesting changes to the Appropriations language requested by the advocacy group. They noted that the reinstatement of the $5.4 million to the CDC line item was the highest priority. While they listened attentively and clearly understood the history of underfunding for ME/CFS, they also stated that it continues to be quite difficult to be successful with new funding requests, particularly during an election year.
The Solve ME/CFS Initiative plans to make additional trips to Washington, D.C, later this year to further our connections with those who can be influential in generating more funds for ME/CFS. Keeping the ME/CFS issue in front of Congress members and NIH officials will serve as a reminder and a reinforcement of the devastation of this disease and the desperation of patients.