More Community Outreach From the NIH: Mangan Sets up Email Listserve for the ME/CFS Community

Posted by Cort Johnson

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Written by Cort

Talk about reaching out and communicating. Dennis Mangan, the leader of the CFS Working Group at the NIH, has set up a ListServe that will automatically send you information from the NIH on what their ME/CFS activities. Bit by bit Dennis is transforming the way the NIH operates with regard to the CFS Community…….
Let’s look at what he’s done thus far

• Brought members of the Trans NIH Working Group to the CFSAC meeting for the first time in at least 10 years
• Met with patients for over an hour after the CFSAC Meeting
• Now refers to CFS as ME/CFS and changed the name on the website to reflect that
• Added at least one patient representative to the steering committee that will create the State of the Knowledge Workshop
• He is making over the NIH website
• Has created a listserv to immediately inform the community of actions the NIH is taking

These are not the kinds of actions we have come to expect from federal officials. Dr. Mangan clearly is turning over a new leaf and wants to involve the ME/CFS Community. (One hopes Dr. Unger will take note and take similar steps.)

Signing up for the Listserv in large numbers will, of course, send a message to Federal officials of our commitment to a strong federal program (they count everything!)