Update on August 1 Meeting with Dr. DeSalvo from HHS

Earlier this week, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met with Dr. Karen DeSalvo, acting assistant secretary for health. The purpose of the August 1 meeting was to impress upon Dr. DeSalvo how woefully inadequate the response to this disease from the U.S. Department of Health and Human Services (HHS) has been—that it is still too slow and too little—and to call on HHS to dramatically step up its commitment to ME.

Also participating in the meeting from HHS were Andrea Harris, Dr. DeSalvo’s chief of staff, and Dr. Nancy Lee, deputy assistant secretary of health, from the Office on 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. As Dr. DeSalvo had seen in her experience in New Orleans after Katrina, these factors have left ME patients with a sense of being left for dead by all those who should be helping.

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.

Carol Head of Solve ME/CFS Initiative said, “I was thrilled to be included in such a high-level meeting, and I look forward to future collaboration between the ME/CFS community and HHS.”

August 5, 2016
  • John Gills

    After 40 years of facing scorn, this is wonderful to hear. Keep up the good work and fight the good fight!

  • MR AIDAN G WALSH

    Do not expect anything from the U.S.Government they are all talk talk talk we will soon learn the truth anticipation of several Replicated Papers on Radiation Sickness links thanks to dedicated Researchers in Hamilton Ontario Canada McMaster University who have now replicated the Chernobyl experts work then the Lawsuits will be filed for damages 100% they the Governments have known for decades that Radiation is the underlying Cause…This is why they stall Research…Another thing that does come up is patients test Positive to hereditary fructose intolerance (HFI) but it is also tied to Radiation Sickness the (HFI) test is done by Metabolic Genetic Doctors…Its amazing how Patients test Positives to Radiaton by Government urine samples testing…Is this the Cause? We will know very soon if this is the truth then we will see numerous Suits being filed in Courts of Law…

    • Global Wonk

      Aidan Walsh – you put forth some interesting information but the lack of punctuation (where do the sentences end???) and proof reading cause it to not be of much use.

      Also, if you read the study or papers you’re referring to then providing a link to them or an article about them would be very helpful. I tried keyword searching but could not find what you are speaking about. If you have links, please provide. Thank you.

      • AIDAN WALSH

        The National CFIDS Foundation radiation page plus any documents on Hereditary Fructose Intolerance Boston University has a good website on HFI.

      • AIDAN WALSH

        Sorry to disappoint in my writing Global Wank. Where did you get a Name like that?

  • Pingback: Pennsylvania petroleum engineering part time job as surprising cbc rn sign | Petroleum Engineering News()