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Transforming NIH: Mangan Sets up NIH Email Listserve for the ME/CFS Community

Talk about reaching out and communication. 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. This is another way Dennis is transforming the way the NIH operates with regard to the CFS Community.......

Lets 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
Click to expand...

Comments

sensing progress
Really nice to see these actions being taken. Now what the heck is the Trans-NIH ME/CFS Research Working Group? Is it new? And who is Dennis Mangan and what is his Ph.D. in?
 
LJS
You can subscribe via the web here: https://list.nih.gov/cgi-bin/wa.exe?SUBED1=NIH_MECFS_WG-L&A=1
Once you are a member of the listserv and if you do not have a password set you can setup a password here: http://list.nih.gov/cgi-bin/wa.exe?GETPW1=
Then you can login, change your email settings, and read messages; this is not needed as they will also be emailed to you but provides another method to read the listserv: https://list.nih.gov/cgi-bin/wa.exe?LOGON=A0=NIH_MECFS_WG-L&t=&L=NIH_MECFS_WG-L

I just signed up today so I do not know how much email will go out on this listserv but some create a large amount of emails. If that is the case most web email accounts or email clients let you setup sorting rules so that you can automatically put all email from this listserv in a folder.
 
Cort
sensing progress;bt3837 said:
Really nice to see these actions being taken. Now what the heck is the Trans-NIH ME/CFS Research Working Group? Is it new? And who is Dennis Mangan and what is his Ph.D. in?
Click to expand...

That is the group that is in charge of developing and funding program at the NIH for CFS. They are all reps from the various Institutes at the NIH.
 
rwinsmom528
Cort;bt3843 said:
Let's fill that listserv up! I tell you they count everything!
Click to expand...

Just signed up and plan to send a thank you card to Dennis Mangan to the address you provided. Hope that helps,too. These changes sound like something we really want to encourage. :victory:
 
J
Dear Sensing Private:The NIH Trans-Working group is a governmental mandated entity that has been appointed to look at why the CFSAC oversight committee has not done their job. A working group is just that. It is not a "hearing"....it is a meeting designed to appease questions that originated and were mandated by Congress to the CFSAC and have not been adhered to by the CFSAC in accordance to political law. This group will listen to information presented and will make a "showing" that progress was made to try and resolve disputes which have been brought up.
 

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