Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by shannah, Jan 4, 2011.

  1. shannah

    shannah Senior Member

    Messages:
    1,358
    Likes:
    1,631
    Subscribe To NIH ME/CFS List

    Here are instructions from Dr Mangan about how to participate in a government listserve about upcoming research pertaining to ME/CFS.

    --------------------------------------------------------------------------------------------------
     
  2. SpecialK82

    SpecialK82 Ohio, USA

    Messages:
    992
    Likes:
    819
    Ohio, USA
    Thanks for posting, glad to see this.
     
  3. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    517
    Los Angeles, CA
    When I attempted to do this, I got an "invalid security certificate" warning upon attempting to click on the verification email link. I emailed Dennis Mangan to let him know. Did anyone else have this problem?
     
  4. SpecialK82

    SpecialK82 Ohio, USA

    Messages:
    992
    Likes:
    819
    Ohio, USA
    Mine worked fine, it said I was subscribed, hope you get it worked out
     
  5. Cort

    Cort Phoenix Rising Founder

    I Mangan.jpg 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. This is another way 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!)

    Once again I missed that there was already a thread up :)I merged the threads and altered the title so that there are more keywords in it....hope that's alright.
     
  6. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,613
    Mine also worked.
     
  7. ballard

    ballard Senior Member

    Messages:
    145
    Likes:
    719
    I'm signed up.
    This seems like an excellent step in the right direction.:thumbsup:
     
  8. Cort

    Cort Phoenix Rising Founder

    I'm in! _ that was kind of weird and fun at the same time. Haven't seen a LISTSERV for quite a while. :)

    He's really been a breath of fresh air :)
     
  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    Messages:
    3,763
    Likes:
    4,843
    WA, USA
    That is so great! Dr. Mangan really is working from the heart, isn't he?

    Do you think this is something suitable for our doctors as well? Mine would be interested.
     
  10. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    5
    southern california
    Good stuff coming from Mangan and the NIH. good start!
     
  11. shannah

    shannah Senior Member

    Messages:
    1,358
    Likes:
    1,631
    What's that saying ... Actions speak louder than words!

    He certainly seems to be doing more than just paying lip service to us.
     
  12. LJS

    LJS Insert Witty Comment Here

    Messages:
    207
    Likes:
    7
    East Coast, USA
    I posted this over on the blog post but I will repost it here to give people an alternate web based method to sign up for the listserv

    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.
     
  13. Cort

    Cort Phoenix Rising Founder

    Let's get the ListServ filled up! I tell you they count everything......:)
     
  14. Cort

    Cort Phoenix Rising Founder

    Do you mean he seems to be doing more than just paying list service to us....I agree! :))
     
  15. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,437
    South Australia
  16. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    I am also getting 'Security Certificate Not Trusted', in two different browsers.

    Reluctant to proceed and sign up before we get confirmation from Mr Mangan directly.
     
  17. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    75
    Switzerland/Spain (Valencia)
    I could sign up without any problems. Yes, let's all sign up, show we are there...
     
  18. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    75
    Switzerland/Spain (Valencia)
    Are you sure that this is him? I think we should be careful here, because the blog is really outspoken :angel: and we probably don't want to start a rumour that will later turn out to be wrong. Especially since he seems to be doing a good job...

    In the post you've linked to it says this person has ME/CFS. Is this true for the NIH's Dennis Mangan? I would guess no, because in this case he would hardly be able to do the kind of work he's been doing all the time.

    I think it's not him and we should clarify this first...
     
  19. shannah

    shannah Senior Member

    Messages:
    1,358
    Likes:
    1,631
    I don't think this can be the same Dennis Mangan.

    When you click on his profile, it says he's located in California.

    Interests are listed as women, money and drink.

    Favourite Movies: Ride With The Devil, Invasions of the Body Snatchers, The Man Who Wasn't There, The Duellists
     
  20. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    75
    Switzerland/Spain (Valencia)
    And i thought this was the ideal profile for a job application at the NIH :D
     

See more popular forum discussions.

Share This Page