#MEAction sends letter to NIH ahead of ME/CFS meeting

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Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday, Nov. 5 at 11am Eastern Time. 

#MEAction staff and volunteers worked quickly to draft a letter with detailed questions for NIH in advance of this meeting. You can read the full letter here. We will keep pressing federal agencies to do more to accelerate ME/CFS research. Topics covered in our letter include:

  1. Incorporating ME/CFS knowledge into upcoming NIH workshop on long COVID
  2. Advancing progress at collaborative research centers
  3. Clarifying intramural ME/CFS patient recruitment plans
  4. Identifying ME/CFS inter-agency working group stakeholder engagement opportunities
  5. Accelerating ME/CFS research in the era of long COVID
  6. Catalyzing necessary clinical treatment trials
  7. Understanding data management coordinating center goals

We encourage the community to attend the telebriefing and raise questions about these and other topics. You can find details about how to join this telebriefing on our event page

These federal agency meetings are an opportunity to make our voices heard. All of us that live with ME, or care for someone with ME, are stakeholders in this fight against a disease that has taken so much from us all. We need to know what our federal agencies are doing to address the ME/CFS crisis and hold them accountable with our questions and our input.

The NIH is the largest public funder of biomedical research in the world and it has a crucial role in addressing the complex scientific research challenges that confront ME/CFS. Decades of stigma, misinformation and neglect continue to harm people with ME. We need a NIH response that is urgent, comprehensive and proactive. It must address critical issues and dedicate the necessary resources. People with ME deserve nothing less.

Other NIH news:

  • Dr. Fauci recently announced an upcoming NIH workshop on Post-Acute Sequelae of COVID-19, which will take place December 3 and 4. The workshop will be streamed live and anyone can attend. #MEAction believes it is essential that ME/CFS knowledge be appropriately incorporated into this workshop. We prioritized questions on this workshop in our letter to NIH.
  • The ME/CFS Collaborative Research Center’s outreach and engagement initiative has just been launched. #MEAction will be partnering in this initiative along with other ME/CFS advocacy and research organizations. The CRCs are funded by NIH, and the guest speaker for the November 5 telebriefing will be Allison Kanas, Administrative Director & Director, Community Outreach & Engagement at the Center for Solutions for ME/CFS at Columbia University.
  • The last NIH telebriefing was held on March 17, 2020 (transcript & call audio here).  The NIH also presented at the Interagency ME/CFS Working Group Meeting on August 11, 2020.
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