President’s letter March 15, 2016 – Advocacy report

First, a huge thank you to everyone who wrote a personal letter to Senator Warren or Representative Kennedy. I felt the power of all of you with me during our trip to Washington D.C. I also thank our Board member Leah Williams for attending all the meetings, as well as arranging one with her Representative in Washington, Rep. Katherine Clark.

We are novices at lobbying, but by participating with the other advocates from around the country who are in the U.S. Action Working Group, and having talked through our strategy and the process with many who are more experienced, Leah and I felt well prepared for the five meetings we had last Thursday, March 10 2016.

In addition to your letters, we took:

  • A fact sheet stating the actions we were asking them to take, and the rationale for those actions. We also had a copy of the more extensive fact sheet developed by the U.S. Action Working Group.
  • A letter to Dr. Francis Collins, Director of the National Institutes of Health, thanking him for his recent initiatives on ME/CFS and asking for an equitable share of funding for ME/CFS (which we were asking them to sign and send).
  • Suggested language for the FY2017 Appropriations bill, which we were asking them to file.

If you want to see these documents, they are posted here.

We had 3 types of meetings: with Congress people, with health policy staffers, with Senate Appropriations Committee staffers.

Meetings with Congress people

In all the meetings, we were talking with a staffer, usually a legislative aide (LA). We’ve been told that the LA’s are very knowledgeable about the issues in their area, and have influence with their bosses. Our purpose was to educate them about ME/CFS, especially its impact on the lives of both patients and families, and the lack of research and the great difficulty in finding adequate medical care. Here’s where your many letters were powerful.

In all cases, the LA’s listened attentively, asked good questions, and seemed genuinely interested in learning more. However we didn’t get any promises except that they would look further at the material we brought. Sen. Warren’s aide was perhaps the most knowledgeable of the 3, since we visited with her last summer as part of #MEAction’s 21st Century Cures campaign.

We didn’t get any promises from these visits. We actually didn’t expect to get any promises. We expected to get careful attention, which we did. The purpose is education and awareness and building a relationship over time. Representatives of many “disease groups” visit congress, so it’s better to be there than not, lest we are “out of sight, out of mind.”

Although we go with specific requests we would like our representative to take, we know that realistically they cannot do everything everyone wants. But they need to know that we are out there too, with our own set of needs. We do know that all of our Massachusetts representatives are working hard to get more money for NIH.

The advocate group we are part of, the U.S. Action Working Group, is working hard to find a Senator and a Representative who will take on our particular issues and champion our cause with their colleagues. This is hard to do, and it will most likely be someone who has a personal experience (family member or friend) with the disease, or perhaps someone interested in getting an ME/CFS Center of Excellence started in their district.

Other meetings

We attended the health policy staffer and Appropriations Committee staffers meetings with other advocates (Carol Head and Christine Williams from Solve ME/CFS Initiative, Mary Dimmock, independent advocate, and Ashley Hultman, a patient and former House legislative aide). We found the staffers in both of these meetings to be well-informed about the issues we face. We learned that the Senate is working on a set of bills roughly corresponding to some aspects of the 21st Century Cures bill that passed the house last year. Both groups understood and supported more funding for NIH, but pointed out the realities of both budget constraints and the current political atmosphere.

And so....

We represent one disease among hundreds. Ours is as important as any, so we should be visible in Washington. We see these visits as an on-going process, keeping our representatives informed of our concerns and issues, and making them aware of how our government in general, and each of them in particular, can help. During March, other ME/CFS advocates were also visiting or calling their representatives with the same message. As a group we were successful in getting ME/CFS funding for the CDC restored for 2016. This year we took a major step in reaching out to Congress, and working with other advocates throughout the country to amplify our voices. We need to repeat and expand this next year and the year after. This is slow but necessary work.

The momentum is building. The U.S. Action Working Group has taken joint action in submitting a 10-point plan for research to NIH. We are also working with the CDC to develop principles for educating medical professionals on ME/CFS and revising their web pages. Our federal partners are paying close attention to what CFSAC and our community are saying, and are reaching out in dialog. This change has been too long in coming, but I believe it is finally here, which makes our work to shape policy and medical education, increase funding, and drive research even more important.

See also:

Solve ME/CFS Initiavive's summary of our visits to Congress

Audio and transcripts of NIH teleconference with advocates, March 8, 2016

NIH Pledges Long Term Effort on Chronic Fatigue Syndrome (ME/CFS): Promises to “Stay the Course” by Cort Johnson

Continuing our advocacy

Our Association is continuing to work with other advocates in the U.S. Action Working Group. Here are some of the activities that are happening now. 

  • Preparing Outside Witness Testimony for the House and Senate Appropriations Committee
  • Organizing constituents and developing materials so that patients and advocates across the country can maintain contact with their Senators and Representatives
  • Developing principles for ME/CFS medical education for the Centers for Disease Control and Prevention (CDC)
  • Reviewing the CDC's "CFS" web pages to see where further modifications are needed
  • Maintaining contact and dialog with the NIH intramural research team as their ME/CFS study gets underway

If you can help with any of these activities, especially maintaining contact with your own Senator and Representative, please Contact Us and let us know! We need to be a rising chorus. Our voices are stronger together!

With warm regards,

Charmian Proskauer, President
Massachusetts CFIDS/ME & FM Association