National Center for Health Research National Long COVID Conference on October 3, 2022

The conference was a huge success, attracting 39 enthusiastic stakeholders in-person at the Hamilton Hotel in Washington, D.C. and approximately half the 98 stakeholders who registered to participate remotely.  The 8.5 hour meeting included time for networking and informal small group discussions as well as six one-hour panel discussions that consisted of approximately 30 minutes of presentations and 30 minutes of Q & A.  The panel topics (in the order presented during the conference) were the following:

  • Autoimmunity and Long COVID
  • ME/CFS and Long COVID
  • The Challenges of Caregiving
  • Long COVID Among Children and Teens
  • The Role of the VA
  • Ongoing Research and What’s Needed Next

The agenda for the conference is available here.

We asked all participants to anonymously evaluate the six panels and the conference as a whole. Just before lunch, we asked participants to separately evaluate each morning panel in terms of 1) presentations and 2) Q & A.  At the end of the conference, they were asked to evaluate the afternoon panels. Evaluations were on a rating scale of 1-5, with 5 being the strongest agreement with the statements. For each panel, participants were asked “were the speakers very informative, interesting, and easy to understand” and “Was this Q & A interesting?” At the end of the conference, we also asked participants if “the breaks and lunch provided opportunities to get to know one another in the field” and if they were “glad” they attended the conference, each also on a scale from 1-5.  Open-ended comments were also requested for all questions. Speakers did not evaluate the panels on which they spoke.

The overall rating of the conference was 4.95 for in-person participants and 4.8 for remote participantsThe in-person ratings for the panels ranged from 4.7 to 5.0, and the remote ratings ranged from 4.5 to 5.0.  For the Q & A, the in-person scores ranged from 4.6 to 5.0 and the remote scores ranged from 4.6 to 4.8.    The average networking score (in-person only) was 4.6.

Here is a sample comment from an in-person Stakeholder participant, sent via email after the conference:

This conference was a needed inspiration in bringing together colleagues and patients, working in a unified fashion to solve the intense and myriad problems brought on by Long-Covid.  The material presented was professional and free of all commercial bias, and helped us see where we stood clinically in relation to others doing similar work around the country.  It gave us treatment and management ideas that we can pass along immediately.  The patient stories added insight into the lived experience of Long-Covid as well, increasing my commitment to focus on this condition.  The very next day after the meeting, I was able to share knowledge with more than 50% of my patients regarding what I had learned.  This has continued throughout the week.  Patients were inspired to know the meeting had happened, and encouraged by the collaboration and insights.  All participants with whom I spoke after the meeting voiced the hope that we would be able to repeat this event at least yearly, and perhaps have some virtual forums in-between.  These types of gatherings are critical as we work to improve the lives of severely affected individuals, suffering from a condition for which there is still tremendous medical and social misunderstanding.