More Community Outreach from the NIH: Mangan Creates Listserv to Communicate with ME/CFS Community

Posted by Cort Johnson

4689 ManganTalk about reaching out and communicatingup up up up up up up up up. 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!)

Dear ME/CFS investigators, patients, advocates, writers, families and friends:

An email listserv has been set up to enable information to be sent to you quickly and more frequently regarding NIH ongoing activities associated with ME/CFS research and the NIH ME/CFS Working Group activities. This will include informing you of new postings on the soon-to-be-released NIH Working Group website (still under construction).

If you wish to subscribe to this free list service, please do the following:

Send an email from your preferred computer address to LISTSERV@LIST.NIH.GOV

The text of the message should read: SUBSCRIBE NIH_MECFS_WG-L {YOUR FIRSTNAME AND LASTNAME}

You will then receive an email and must confirm your desire to join the list. You can unsubscribe from the list at any time.

Please note that this is an information only email list service… not an Internet discussion forum.

All the best, Dennis

PS: please share this announcement with others on your email lists who might wish to join!

Dennis F. Mangan, Ph.D.
Chair, Trans-NIH ME/CFS Research Working Group
Senior Research Advisor
Office of Research on Women’s Health, OD
National Institutes of Health
6707 Democracy Blvd., Suite 400
Bethesda, MD 20892-5484
Tel: 301 496-9006

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