Article: More Community Outreach From the NIH: Mangan Sets up Email Listserve for the ME/CFS Communi

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

You can view the page at http://forums.aboutmecfs.org/content.php?312-Mangan-Sets-up-NIH-Email-Listserve-for-the-ME-CFS-Community

 

If you want to send this message further use the share button to send it to your Facebook page or Wordpress blog, etc.

 

I've already signed up and plan to send Dr. Mangan a thank you note for all he is doing for the ME/CFS community.

 

He really is a breath of fresh air and is off to a great start! :victory:

 

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?

 

The only information they need is our name?
Will they contact us with more details?

 

The only information they need is our name?
Will they contact us with more details?

Hi Neilk,

After signing up, they'll send you an email right away with a confirmation link in it. Just follow the instructions in the email (usually just clicking the link) and it will take you to a site confirming your registration. Whenever they have information to send to the CFS community, you should automatically receive it in your inbox.

 

Hi Neilk,

After signing up, they'll send you an email right away with a confirmation link in it. Just follow the instructions in the email (usually just clicking the link) and it will take you to a site confirming your registration.

i got an email right back but no confirmation link or instructions to confirm registration. it just came back with some weird computer jargon:

Summary of resource utilization
-------------------------------
CPU time: 0.000 sec Device I/O: 4
Overhead CPU: 0.000 sec Paging I/O: 0
CPU model: 4-CPU 3333MHz Xeon X5260 6M (2048M)

 

Hi Neilk,

After signing up, they'll send you an email right away with a confirmation link in it. Just follow the instructions in the email (usually just clicking the link) and it will take you to a site confirming your registration. Whenever they have information to send to the CFS community, you should automatically receive it in your inbox.

Thank you Shannah,

I understand now. This is for future information that they want to send to people who have registered.

 

And who is Dennis Mangan and what is his Ph.D. in?

edit - turned out to be merely rumor.

 

Can you sign up for this in the UK?

BB

 

I don't see why not bullybeef. I've been on other similar lists and they have all been international. I signed up for this one without any problems and I'm in Canada.

 

Thanks shannah!!

 

What what? Dennis Mangan has CFS himself? How have I missed this information before?

 

Mangan does? I didn't know that... Are we sure?

 

Dr. Mangan does not have CFS

What what? Dennis Mangan has CFS himself? How have I missed this information before?

I emailed Dr. Mangan to check on this rumor, and received the reply below:

Dr. Mangan,

I know you are very busy, so please forgive the intrusion to check on an internet rumor. There is a CFS patient named Dennis Mangan who has a blog: http://mangans.blogspot.com/search?q=cfs

Can you please confirm whether or not this blogger is you? Are you willing to confirm whether you have CFS or not? Rumors stating that you and the blogger are one and the same are starting on one of the patient forums. I would very much like to share your response to these questions with the patient community, before the rumors get out of hand.

Many thanks,
Jennie Spotila

*****

Hi Jennie,
Thanks for the heads up. No I don't have CFS and don't have a blog. Tx, Dennis

(emphasis added)

 

I think this might be an unconfirmed rumour started in another thread with Post #15 in

http://forums.aboutmecfs.org/showth...mail-Listserve-for-the-ME-CFS-Community/page2

 

Whoa! Slow down there, rumor mill!

 

Thanks for the clarification, I apologise for spreading the rumor.

 

-Brought members of the Trans NIH Working Group to the CFSAC meeting for the first time in at least 10 years

wow that's pathetic they haven't attended in so long. good for Mangan. at least he's doing some (relatively minor) positive things. gives one a teeny bit of hope!