United States USA: ME/CFS Outreach to ARPA-H

Hey all,

Just sharing an outreach opportunity to the newly formed Advanced Research Projects Agency for Health (ARPA-H - https://arpa-h.gov/) that will get off the ground in 2023 in the US.

Thus far, it seems that ARPA-H is genuinely interested to hear from the American people (
https://twitter.com/i/web/status/1608538655747936263

) on overlooked diseases & health inequities. As we know, ME/CFS has been overlooked and underfunded at the NIH for far too long, so there seems like a real opportunity that ARPA-H could make a difference for us (or at least hope).

The inaugural director, Dr. Renee Wegrzyn, has publicly said that 10-20 Program Managers will start at ARPA-H in 2023. These Program Managers will then focus on these challenges identified.

From what's been shared to me, several researchers in the ME/CFS & Long COVID field have applied for these positions.

If you'd like your voice to be heard & hopefully represented in the Program Manager (PM) positions that are appointed, this form (https://arpa-h.gov/contact/) is super fast & easy to complete that will go to the ARPA-H team.

1. Fill out your basic info (For 'Inquiry Type' on the form, I filled 'General Inquiries.' Of course for 'Affiliation', this is a 'Public' outreach)
2. In the message box, tailor what you'd like ARPA-H to know

Message example: "I am reaching out today to express my hope that ARPA-H will prioritize Program Managers (PM) that will look for solutions with infectious-associated chronic complex diseases such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID & POTS"

I thought it may be a tangible way to give feedback to this new program that could make a difference.

- Thanks, Dakota