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#MEAction took a seat at the table last week during the two-day meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which provides recommendations to the U.S. Secretary of Health and Human Services (HHS) on issues related to ME/CFS.
Terri Wilder served as the liaison for #MEAction at the CFSAC meeting where she gave a presentation about the work that the members of #MEAction are doing to fight for equality for people with ME. Watch the #MEAction presentation here.
“I was honored to be in the room representing #MEAction,” Wilder said. “I feel like our voice made a difference, that our perspective added to the conversation in thinking through the important issues that impact our lives.”
“We have a lot of work to do in figuring out how to advocate through a bureaucratic system that isn’t always adaptable to the quickness of response that we need,” Wilder said.
The community must begin preparing now for the next CFSAC meeting 6 months away (CFSAC meets twice yearly) to ensure that the community gets critical items on the agenda, Wilder stressed. For example, there should be a Medicare representative sitting on the advisory committee in order to ensure that patients get adequate care through services like teleconferencing when they are too sick to leave their homes.
The CFSAC charter is up for renewal at the end of 2018, and the ME community must begin the discussion now on what the future of the charter should look like, Wilder continued.
Wilder spent hours preparing for the meeting with other #MEAction activists who contributed their knowledge and expertise in strategizing for the meeting, along with the support of #MEAction’s Community Organizer, Ben HsuBorger.
During the #MEAction presentation, Wilder spoke about the virtual advocacy trainings and online guides that the community has undertaken this year, as well as the advocacy work being done in New York through the #MEAction network. The Living with ME Support Group on Facebook has been going strong, along with weekly and monthly teleconferencing calls for the community to discuss issues, share experiences and offer support to one another.
Wilder also spoke about the deaths of two women with ME this year, Laura Dawn Henderson at the age of 33, and Anne Berry at the age of 48.
Wilder took the opportunity to address the Department of Veterans Affairs about the importance of not recommending Graded Exercise Therapy for people with ME, which can be dangerous to their health.
Wilder also heard from the National Institutes of Health liaison, Vicky Whittemore, Ph.D, that the Collaborative Research Centers (CRC) receiving government funds for ME/CFS research are discussing stakeholder engagement next week. Wilder took the opportunity to tell Whittemore that each research center should have its own Community Advisory Board.
“There is some concern that the centers will just give stakeholder engagement lip service,” Wilder told Whittemore. “We need to know that there will be a process for ongoing community input.”
Another immediate issue is filling the committee seats; currently, half of the 13 seats are vacant. CFSAC will call for applications at the beginning of 2018, and #MEAction plans to reach out to scientists and the patient / caregiver community to bring in expertise from the community.
CFSAC did swear in two new members: Lucinda Bateman, M.D., Medical Director of the Bateman Horne Center, and Amrit Shahzad, MBBS, MBA.
The Medical Education Working Group presented on its recommendations for educating healthcare providers on ME/CFS. Read the full article about the Medical Education Working Group here.
These presentations were also given:
- Pediatric Education Working Group
- Parent Centers Supporting Families with Children with ME/CFS
- Supporting the Educational Needs of Young People with ME/CFS
- National Institutes of Health on funding for the Collaborative Research Centers
- Centers for Disease Control and Prevention
- Simmaron Research
- Massachusetts CFIDS/ME & FM Association presented on its activities
- #MEAction presented on its activities
- Jose Montoya, MD, Professor of Medicine at Stanford University, spoke about the research being done on adult ME/CFS.
Learn more about CFSAC.