An important new ME/CFS listserve from the NIH

[Guest guest]

This message/offer/request was posted on Phoenix Rising:

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!) Mangan's own letter:

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@...

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