Videocast of Trans-NIH group’s ME/CFS proposals at 2pm today

The US Trans-NIH (National Institutes of Health) ME/CFS Working Group will present its proposal to advance research into the disease during a live webcast at 2pm (Eastern Time) on Thursday 26 May.
The broadcast will take place from a meeting of the National Advisory Neurological Disorders and Stroke Council. In order to be funded, proposals must first be approved by an Institute’s advisory council.
The Trans-NIH group was founded in 1999 but has yet to deliver major benefits. Patient advocate and blogger Jennie Spotila said, “The last time the Trans-NIH Working Group created any kind of plan was after the State of the Knowledge meeting in 2011, and NIH steadfastly refused all requests to see that plan.”
However, the NIH describes the group as having been “revamped” at the end of last year, raising hopes among patients that its new initiatives will be taken seriously.
In early March, the NIH said, “The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive research strategy for ME/CFS research that will include new RFAs (Requests for Funding Applications). Clearly, as stated in the initial response, biomarker research will be critical to understanding the underlying causes and mechanisms of disease in ME/CFS.”
Commenting on the proposal, Cort Johnson, patient advocate and founder of Health Rising, said, “I’m hoping for clinical trials for Rituximab and Ampligen… I would very pleasantly shocked if a couple of Centers of Excellence showed up.” He added, “Vicky Whittemore, our champion at NINDS, has said she thinks we will be pleased.”
A recording of the meeting will be made available at a later date.
 

Facebook
Twitter
WhatsApp
Email

Latest News

Text across top of image reads: "Experts in infection associated chronic illness" with "WE WANT YOU!" bolded below it. Hand with finger pointed out at viewer. "Apply now" buttons to the left and right with mouse cursor clicking on them.

Infection-associated chronic disease experts needed at ARPA-H

Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research projects with the goal to solve intractable health problems. As ARPA-H is in the process of hiring its first cohort of program managers, #MEAction and a coalition of chronic disease advocacy groups have published an open

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top