On June 3rd the CDC held its latest MECFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call with the ME community. The need for change in the CDC’s stakeholder engagement meetings has been a long time coming. However, this Monday, the majority of the call was a presentation comprised of simple lifestyle advice for ME, including a song about how to pace set to the tune of The Way We Were. The community was shocked and dispirited to see evidence that we are children rather than equal partners in the eyes of the CDC.  There was no opportunity for stakeholders to have a Q&A with the CDC, rendering the meeting prescriptive as well as demeaning.

This is unacceptable and indicates a fundamental lack of commitment to transparency and accountability by the CDC on what they are doing to combat the ME crisis. Moreover, it shows a breathtaking lack of respect for the decades of expertise represented by the stakeholders present on the call.  We have sent the following letter to the CDC demanding changes to the way future stakeholder engagement calls should be structured.

Dear Dr. Unger,

Since the unceremonious dissolution of CFSAC last year, one of the only ways for activists and advocates to engage with CDC was by teleconferencing on the occasional group call.  These calls are unacceptable, and Monday’s was especially egregious. The CDC should be focused on transparently conveying progress on their initiatives, and getting robust feedback from stakeholders. Instead, there was basic information and lifestyle advice presented to some of the most ME-literate individuals in the world.

We call for concrete and systemic change from the CDC. The structure of these calls should be more like the way that NIH has recently engaged in stakeholder engagement, with live question-and-answer periods in which the community can engage.

These calls are not a PowerPoint presentation but a group activity with equal partners. Partnership means that information is bidirectional.

A lack of detailed information on CDC’s projects constitutes a lack of both transparency and accountability, and that translates into a lack of meaningful engagement.  If there has not been progress in CDC projects, then stakeholders must be made aware of that, too, so that we can determine what must change.

People with ME need momentum on scientific research, medical education, and compassionate clinical care. Advocates, many of whom have been working towards the betterment of people with ME for decades, do not attend calls with the CDC to hear basic advice on self-care.  People are suffering today, and change is within reach. There is no reason for the CDC not to work more collaboratively with stakeholders to create that change in the spirit of mutual respect.  But to achieve these ends, we cannot go on as we have been.

Moving forward, every stakeholder call MUST include both a CDC progress update and an opportunity for live Q&A from stakeholders.

We ask you to restructure your calls to be more effective, strategic, and respectful to the advocates who have so long fought for the goals of treatments, quality care, and a cure for ME.

Sincerely,

Laurie Jones, #MEAction