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I attended the webinar of "The New Wave of COVID: A Conversation with Dr. Ashish Jha" today hosted by USC Anneberg School of Journalism. Jha served as the White House COVID-19 Response Coordinator from 2022-2023. Sharing this response from Jha to a question on Long COVID & RECOVER Initiative...

Totally get what you mean but to be fair now, it's on the medical journal to publish [most likely NJEM, is my hunch..] as NIH released the study to whichever journal is peer reviewing (October will make it month 6 at said journal)

Last note from Dr. Hwang "My lab is focused on continuing our experiments to get additional insights into WASF3 while also trying to translate concurrently these insights into the clinics. I believe it is important to proceed carefully and do the best job possible at each stage, especially...

Also quickly sharing Dr. Hwang’s reply to me today. I asked, “Do you think that Dr. Gibbons and NHLBI will support your pursuit for an exploratory treatment trial in this research?“ Dr. Hwang: “Yes, I am sure that our clinical protocol once it is developed will be supported. I believe the NIH...

Sharing with permission, a message by Dr. Hwang, @B_V. I thought it may be beneficial for visibility for the community to view: "I have received a large volume of emails since the publication of the Washington Post article by Brian Vastag about my research. With a desire to be responsive, I...

Just quickly sharing Dr. Hwang's reply after I forwarded my correspondence to NIH on his research. "Thank you very much for your support, Mr. Hanlon. Will keep doing what I can on my side." And this reply from NIH RECOVER, as I copied them to at least have this research on their radar: "Thank...

(mods, if there's a more applicable spot to share, feel free to move to) https://www.nih.gov/news-events/news-releases/clinical-trial-test-immune-modulation-strategy-hospitalized-covid-19-patients-begins 9/22/23, NIH: "Clinical trial to test immune modulation strategy for hospitalized covid-19...

@B_V From a member on Phoenix Rising forum: “Well - I added lead researcher Paul Hwang to the email and he replied to me already! He thanked me for my support and said that he was certain that Drs. Gibbons and intramural scientific director Dr. Richard Childs would support the planned...

Quickly leaving the template here, if others desire to send to NHLBI Director as well: Message Template: To: NHLBIinfo@nhlbi.nih.gov; gibbonsgh@mail.nih.gov Subject: Please support ME/CFS research conducted by Dr. Paul Hwang Dear Dr. Gary Gibbons, I am writing to you in your capacity as...

Thanks for sharing @Jaybee00. That message inspired me, and I wrote to NHLBI Director too. Hoping others may follow suit as well.

This feature is great, thank you for your efforts on this, @B_V!

Not trying to be nosy @B_V, I just wanted to make sure I didn't miss it! All the best.

[Mods feel free to move most applicable, but sharing as ME/LC advocates in Minnesota secured funding measures passed in state legislation last May through multiple rounds of testimonies & written advocacy, a hopeful pathway to more federal progress] Just sharing that Minnesota Department of...

@Jaybee00 Nath & Walitt were there, who led the NIH ME Intramural Study. Systrom was there too (ME Researcher). You probably already knew that though (is my guess), but sharing if others weren’t privy to.

Star Tribune: "Frustrating futility on long COVID" "So far, the National Institutes of Health's progress has left patient advocates and some scientists underwhelmed. Accountability and oversight are needed." "It didn't seem to be a house-on-fire moment, which it should have been," Osterholm...

Just sharing, @B_V Star Tribune: "Frustrating futility on long COVID" "So far, the National Institutes of Health's progress has left patient advocates and some scientists underwhelmed. Accountability and oversight are needed." "It didn't seem to be a house-on-fire moment, which it should...

Thanks, @B_V! Looking forward to reading. I think my local press (Star Tribune in Minneapolis) is planning on publishing a piece next week on RECOVER / a follow-up to the STAT News feature by Betsy Ladyzhets. Will share here if published.

Hey @B_V! As August comes to a close here, was just wondering if WP is still slated to publish this soon, from what you know? Thanks for sharing this with us.

Correct. I'll flag to the 2 CU PI's I've connected with on RECOVER.

From Dr. Whittmore at NINDS: "The recent publication from Dr. Hwang’s group at NIH is a collaboration with NINDS and Dr. Nath as part of the NIH Intramural research on ME/CFS. I think the results are very interesting and potentially very important, but need to be replicated by another group and...