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

shannah

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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.

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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
 

urbantravels

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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?
 

Cort

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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.
 

WillowJ

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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.
 

shannah

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What's that saying ... Actions speak louder than words!

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

LJS

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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.
 

Sean

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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.
 

eric_s

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Mangan is quite the outspoken guy: http://mangans.blogspot.com/

I thought it might be someone different, but: http://mangans.blogspot.com/search?q=cfs
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...
 

shannah

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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