Public Comment on Engaging People with ME

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.

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6 Responses to Public Comment on Engaging People with ME

  1. “Nothing for us without us.” This only leads to non-compliance by some arbitrary standard we were never involved in setting.

    Excellent comment, Jenny. But I don’t see how they didn’t figure this out themselves – except that they still believe ME/CFS doesn’t and we don’t exist. The next step is including people with ME/CFS, and then ignoring their input anyway. After what it would cost us to give that input.

    Thanks for trying.

    These are the people who are going to have egg all over their faces, and be scrambling madly to get on board, when we get those research markers: diagnosis, cause, treatment.

    I can’t tell you where I would like to put them. It isn’t polite.

    Sorry for the cynicism. It’s been so long. And many of us who have had this a long time are scared/certain we’re going to be told it’s too late for us, when there is finally something.

    I appreciate your many efforts, and I have an idea what they cost you.

  2. Terri says:

    Nothing About Us Without Us

  3. sofia Gurovich says:

    Brilliant letter Jenny . If I could , I would kiss you . I been sick with this disease for over 29 years . It progressed so much , to the point , that I became completely disable , last 5 years bedridden . I’ve had signed petitions , and responses I’ve got from Nancy Pelosi where ridiculously unrelated and stupid plain detachment from reality . I’ve lost hope , and I been a fighter all my life . It’s great that we have people like you , who can fight for us . I know it’s not easy , especially with the disease you have . Thank you very much . You are our hero .

  4. Liz Burlingame says:

    Inspiring. Thank you for not only writing, but giving voice to your words.

  5. billie moore says:

    I am listening to the last person on the second day, Ms. Rochelle Dalton, which might be the most heartbreaking of two days of heartbreaking testimony and possibly years of other testimonies. What bothers me most about this whole CFSAC exercise through the years, in spite of some fine people being involved – both volunteers and ex-officios – is that those who have the power to make changes, primarily Francis Collins and the director of the CDC, will not be hearing any of this testimony. They will not ever read the transcript, which wouldn’t come close to being the same as hearing this. And maybe it’s naive, but I can’t help thinking that if those in power to put out RFAs could hear the public testimony, it might make a difference to their thinking and acting.

  6. Bazia says:

    Thank you! I also made a comment yesterday. Not nearly as articulate but contributing in any way I can is how I keep going.
    Blessings to us all and may empathy, education and compassion continue to blossom from those we need most to CureME2028

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