ME/CFS Outreach to ARPA-H


Senior Member
Midwest, USA
Hey all,

Just sharing an outreach opportunity to the newly formed Advanced Research Projects Agency for Health (ARPA-H - that will get off the ground in 2023.

Thus far, it seems that ARPA-H is genuinely interested to hear from the American people ( ) 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 ( 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


Senior Member
I hope one of the mecfs advocacy organizations is working on ARPA-H

Seems like non-mecfs activism organizations I've signed up for send me emails every month or two asking me to send emails, often prewritten ones, to influence people from the government or some other type of organization but none of the CFS activism organizations ever ask me to sign anything. Seems like there's a decently sized online mecfs community they could tap into for support