I delivered these comments via telephone today at the CFS Advisory Committee meeting:
My name is Jennifer Spotila. I will soon begin my 25th year of living with ME. People with ME know this disease. We have valuable insights and perspectives, not only about what it is like to live in an ME-afflicted body, but about the scientific and medical issues in this field. This is one reason why I am so encouraged that this field is beginning to engage people with ME as partners, because we can teach you.
I have had unique opportunities to learn how to integrate people affected by this disease into research and policy-making. When I served on the Board of the CFIDS Association, I reviewed grant proposals for strategic merit. I am an Ambassador for the Patient-Centered Outcomes Research Institute. I participate in the FDA’s Patient Representative Program. I served on this Committee’s Stakeholder Workgroup. Last year, I co-authored the paper Engaging People with ME as Partners in the Collaborative Research Centers, which is featured on the Faster Cures website as well as MEAction’s.
I list these qualifications to provide you with context for my comments today.
NIH and CDC are just beginning to engage us as partners. The NIH Common Data Elements project for ME/CFS included people directly affected by ME on each of its working groups, a first for the CDE program. CDC has collected input from stakeholders for its website revisions, although the focus group format is not as substantive as it could be. And for the first time in our field, NIH’s RFA for the Collaborative Research Centers required that applicants have a plan for outreach and partnering with ME/CFS stakeholders.
These are steps in the right direction, but I have questions relevant to this Committee’s advisory role:
- Funding for the Collaborative Research Centers and Data Management Center began nine months ago, and work is underway. But not a single center appears to have a functioning community advisory board. What is NIH going to do to ensure that the Centers follow through?
- Will NIH require stakeholder engagement in all of its ME/CFS grants moving forward? What about NIH’s intramural research?
- What efforts are CDC and NIH making to ensure a diversity of views? Reliance upon one or two organizations for the pool of stakeholders is certainly easy and convenient for the agencies and the Research Centers, but no single organization can provide the full breadth of experiences and views that are needed in each engagement effort.
- What will NIH do to engage people with ME in planning the April 2019 meeting on accelerating ME/CFS research?
- How will NIH ensure that people with ME will be substantively involved in all of its own advisory groups and committees on ME/CFS research, including the newly announced NINDS Council’s ME/CFS Working Group?
CFSAC must do more than ask these kinds of questions of the federal agencies. In January 2017, this Committee received a report from its own Stakeholder Workgroup, and voted for the Workgroup to continue developing recommendations. But as far as I can tell, nothing happened. The Workgroup seems to have fizzled. As a result, this Committee has not made a single recommendation to the Secretary on how HHS agencies can effectively partner with people with ME at every stage of research and policy making. This is a significant lost opportunity.
Every person with ME is a fount of knowledge that should not be ignored. Partner with us and we will make your research and policy efforts more relevant, more accurate, and more successful.
But we are not window dressing. Engaging with us is not a box to be ticked. It is a scientific and ethical imperative that people with ME be engaged as true partners and equals with everyone else on your team or committee. Anything less than that it unacceptable.
I urge this Committee to restart the efforts of the Stakeholder Workgroup, and help lead the way towards fully integrating people with ME into both research and policy making. And I urge you to ask tough questions of the federal agencies to better understand how they will engage with us as well. Thank you.