As reported earlier this week, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met with Dr. Karen DeSalvo, Acting Assistant Secretary for Health on August 1. The purpose of the meeting was to impress upon Dr. DeSalvo how woefully inadequate HHS’s response to this disease has been – that it is still too slow and too little – and to call on Health and Human Services to dramatically step up its commitment to ME.
Also participating in the meeting from Health and Human Services were Andrea Harris, Dr. DeSalvo’s Chief of Staff; Ben Panico, Special Assistant to the Assistant Secretary of Health; Dr. Nancy Lee, Deputy Assistant Secretary of Health, Office of Women’s Health; and Gustavo Seinos, Public Health Advisor, Office of Women’s Health.
The meeting with Dr. DeSalvo, which lasted a full hour, was positive and constructive. Dr. DeSalvo was very engaged and well-prepared, leaving those participating with a sense of being heard.
The discussion focused on the need for a fundamental change and some options to achieve that change, such as a community/agency task force. We discussed the many reasons why such a fundamental change is needed: the level of debility of ME patients and the number of patients affected; the long history of neglect and stigma of the disease; the definitional challenges; the lack of research and researcher funding which has had a chilling effect on researchers, academic centers, and pharmaceutical companies; the inaccessible and often inappropriate medical care and disbelief of doctors; and HHS’s failure to meaningfully engage the community or follow up on the recommendations of its own advisory committee, the CFSAC.
Dr. De Salvo asked a number of insightful questions about these issues and also asked about opportunities with efforts like the Precision Medicine Initiative. The other important topic that was discussed was the critical need to include ME in the transition plan for the next administration to ensure that current efforts do not stall.
Dr. DeSalvo agreed to reach out to the Precision Medicine Initiative and also to her counterparts at the Veteran’s Administration and the Department of Defense to identify additional opportunities. She has agreed to meet again in October. In the meantime, we will follow up with the Dr. DeSalvo’s office with specific requests to get additional information and to follow up on suggestions made in the meeting. Examples include a request to NIH on its funding commitment by institute for the next three years and a summary of HHS’s current and planned initiatives for this disease.
As a first meeting, the goal was to impress upon Secretary DeSalvo the seriousness of the disease and highlight how the government’s efforts to date have failed to address the epidemic. #MEAction is engaging the community in a conversation around the May 25th #MillionsMissing protest demands in an effort to ensure that our engagement with the government is informed by the community’s diverse range of concerns and that the demands reflect the majority views of all patients who chose to participate in this process. This will help inform future discussions.
Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the