Needs a sea change, top-down focused effort. Great parting comments from Claudia Carerra that the current pace is not enough, the pace should be months, not years. That guarantees failure and it's absurd that it's (so far) happening again. Great comment from Claudia on pointing out that every outbreak of post-viral illness is treated as an entirely unique thing, every time and again with COVID-19. The patient community is still doing the bulk of the work, especially in dealing with ongoing systemic discrimination in clinical care. TL DR from Wilhelmina and Claudia, only patient representatives: we are doing our job, you are not. Meeting information, including agenda and link to the videocast, will be posted on the Trans-NIH ME/CFS website. We regret that we may not be able to respond during the meeting to all questions that we receive, but we will try to answer as many as possible in the time allotted. Questions will be selected ahead of the meeting and we request that you submit them to Please send your questions in by close of business (COB) Thursday, August 6, 2020. Please see the attached agenda for additional information.ДЇor the question and answer session, we invite questions from the public about the Interagency ME/CFS Working Group and topics on the agenda. A question and answer session will conclude the meeting. Panelists will include representatives from ME/CFS advocacy and research organizations. The updates will be followed by a panel discussion on the Federal and nonprofit community response to COVID-19 and its impact on individuals with ME/CFS. The meeting will begin with updates from federal agencies on their ME/CFS-related efforts. The meeting will be livestreamed on and will also be archived for future viewing. The Interagency ME/CFS Working Group will hold its first meeting on Augfrom 3:00 вЂ“ 5:00 pm ET.

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